It’s a lottery, even in the same postcode!

Today, with kind permission, we reproduce a post written by Chris Lewis a good friend of our Cancer, Older People and Advocacy work and first published on his own blog recently:

 

The work that I do in cancer support has changed dramatically over the years, and I have had to adjust with the increase of demand on my time. My speaking engagements and charity take a bulk of my time now, with writing filling any gaps. But one thing I was determined to continue with is my monthly prostate group facilitation, which I have been doing now for 8 years. This is done at my local cancer centre and we have a group of approximately 30, with new members every month. We have professionals from the local community as guest speakers and everyone shares their experiences to try and improve the offer for patients coming into the system now.Our members come from a very local area and in general visit the same few GPs and mainly three hospitals for their treatment.

But what continually shocks me is the mixed messages being brought back to the group. There is a huge amount of experience amongst our members which is why the group is busy. Most have learned to be proactive with their own care because they have to be!  The guys are a great cross section of prostate treatment with some starting, and others dealing with the side effects of their treatment. This particular cancer has many different options of treatment with different outcomes of course. All have different side effects, and for most people, making a choice is one of the most difficult things they will have to do.

Of course, everyone is affected differently, even when two people have the same disease and treatment which we all know. Treatment is changing rapidly now and even in my time of working with the group, surgery is now being done by robotics, and radiotherapy has become much better targeted to leave less peripheral nerve damage. This is progress of course, along with the more tolerated drugs etc, but why am I not shouting from the roof tops? Simply because our communication is still as poor as ever. With this particular cancer, the treatment decisions can be complex, but it is after treatment where the complications can really begin. Some of the basics of life for men, being embarrassingly difficult. Unable to control accurately when you need to go to the toilet, and wearing nappies, in case of accidents. Erectile dysfunction being also very common for many, after treatment. Having to take hormone therapy for several years, changing your physical appearance, getting regular hot sweats and growing breasts. You can’t begin to imagine those sort of changes can you?

However there are many things around now that can improve life after prostate cancer, but it certainly is a lottery whether you are told about them or not! Many of them are available on the N.H.S, but it seems very few are actually informed what is available. A quick example would be the pads that men wear. People spend a lot in supermarkets buying their own but apparently there is service that delivers them free of charge. Some people know about it and others don’t. The same applies for problem with erectile dysfunction. Tablets, machines, pumps and under the skin valves are all available, but so many people are just not aware much of this exists. It is so strange listening to the group sharing their own experiences. Many looking on in amazement as one mentions a service that nobody else was aware of. Why is this still happening in this day and age?

My initial thought was cost, as that is always one of the first things mentioned, but maybe that is the cynic in me? How can it be that people living in the same area attending few hospitals get very contrasting information? Not being told some of the key elements of what might actually improve their physical and emotional wellbeing. This really shows why it is important for patients to talk to each other and the value of support groups whether online or physical. I have always been proactive with my own treatment and encourage others to be the same. But let’s be honest at the time you are feeling most vulnerable it can be difficult to be ‘pushy.’

We are doing some wonderful things now for people affected by prostate cancer, but what I have learned is that like with most other cancers, it’s the psychological and emotional issues that follow, is where the biggest problems are.Why oh why is it still so ‘hit and miss’ that people get the treatment they require? Whether you have a particular urological nurse or not? If you see a certain Consultant or you don’t?

Communication is still the major obstacle to helping these people. Despite the Internet, and information from many different charities and the health service, it is just not being delivered in the right way. Leaving people to their own devices after they have had traumatic treatment will not help them with their quality of life. Surely after they have been treated, they deserve the best opportunity of returning to as normal a life as can be achieved? It is no longer good enough to think the job has been completed once you leave the hospital. The after effects of many of these treatments can continue for years after, and sometimes for life. We must do more to ensure that each case is looked at individually, how that person lived their life before and what ambitions they may have for after.

In my opinion we must make every effort to improve the quality of life after treatment for people affected by cancer. Not having the services available is one thing but for them to exist and people who need them not to know about them is a disgrace. My experience has shown me that there are still too many ‘cooks’ without real effective collaboration. It can no longer be a matter of luck whether we find what we need!!

This video will help explain some of the issues that people can face.

As always I have share my thoughts and experiences above, and please feel free to share your below. It’s your help that gives me the information I need to ensure positive change can happen.

Chris Lewis: Twitter @christheeagle1 

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If the news is really bad, he will be there to help me get through it

This is why our Cancer Older People and Advocacy Programme matters so much:

Our volunteer peer advocates have been supporting people like Ron: “When the letter came, it said I should take somebody with me. The problem is that I didn’t know anyone well enough to ask them to go with me.

I should have realised that I was going to get some bad news by the fact that they did suggest I didn’t go alone. Anyway, I did go alone and yet despite the clues, I was really shocked that I was told that I had prostate cancer. I went numb and my brain stopped working. It was all in a haze.

Later on I couldn’t remember anything that the consultant said to me. I know I was given a lot of leaflets because I had them when I got to the car. I don’t remember driving home at all. I felt a great sense of confusion, apprehension and got very depressed very quickly. I couldn’t bring myself to look at the leaflets that I was given because the whole idea of having cancer was terrifying and I had this idea that if I didn’t look at them, it may go away. Stupid when I look back.

I couldn’t even decide if I wanted to tell my children about my illness. I can’t really tell you why I felt like that. It may be I didn’t want to bother them, or maybe I was trying not to confirm the fact in my own mind. I was frozen and unable to do anything. I did come across somebody who knew about the cancer advocacy services. They gave me the leaflet and I called for help.

A volunteer advocate called David came along to see me at home. I got on very well with him from the start. He assured me that all the things that we would talk about would be confidential, which was still important to me at that time.

David was a really good listener and I was able to tell him my story very easily and without any difficulties. He had had an operation for cancer himself and was undergoing observation still. We talked for a long time in that first meeting and the longer it went on the more relaxed I began to feel. I was still worried of course but my brain seemed to be starting to think again.

One of the things that David and I decided to do on his second visit was to put together a list of questions that I should ask the doctor at my next appointment. I realised that I didn’t know anything at all about my illness and any treatment that might be proposed. David offered to go along with me to that appointment and I quickly agreed. I knew that I would probably not ask the questions or remember the answers if I went alone.

In the meanwhile we went through the leaflets that the Consultant had given me and together we got the picture of exactly what it was that I was suffering from and what might be done to help me. At our next meeting I had moved along far enough to tell David that I hadn’t told my daughter and son about my diagnosis. We talked and I decided that I wouldn’t tell them yet as I wouldn’t be able to answer the questions that they would have for me.

David and I started to look at possible sources of care that I may need. We also looked at various ways that I might be able to make myself more financially secure, or viable, as I was then starting to worry about money. I don’t know why at 72 years old. He found me the address of various places that offered advice and then helped me write a letter. I don’t have any answers yet but that at least has started that ball rolling.

David came along to the meeting with the Doctor and it was good that he did. Along with the trauma of all that I had been told, I have to confess that my memory has begun to fail me as well. That’s been happening for a few years. David was able to take notes and ask the questions that I was missing on my list. The Doctor was very good as well and he was very patient with me.

I look forward to David coming around or telephoning me. I know he will be there when I need to go to the consultant again, which is coming soon, when he tells me what is going to happen. I will not have to go to another appointment alone. If the news is really bad, he will be there to help me get through it. If it’s a matter of describing treatments, he will be able to ask the right questions and then tell me all about it when we get home.”

Cancer can touch every aspect of our lives. Some issues are resolved easily such as access to benefits or transport arrangements others are complex and take much more time.

All of our volunteer peer advocates take time to build that all important trusting relationship which enables the older person to confide worries and concerns. It is this trust that forms the basis of the relationship, our advocates understand the impact of a cancer diagnosis on the individual and are able to address worries and concerns with skill and sensitivity. That’s why our service is so different from every other. Our volunteer peer advocates really do have the gift of time.

You can read more stories like Ron’s in our publication Every Step of the Way which can be accessed here

Marie McWilliams, OPAAL

No, not all men affected by prostate cancer are straight and no, my wife will not be picking me up after treatment

Jim Peters blogs at Rant from the Suburbs after reading this piece he had published with Macmillan in April we contacted Jim who kindly gave permission for us to reblog this post from his blog.

Jim Peters from Rant From the Suburbs

I just read an entry from Nick Wright on the Prostate Cancer UK blog entitled “Life after prostate cancer – it’s about more than surviving”, which, for me, was very inspiring. I liked the piece. I even clicked on “Like”. I’d recommend anybody interested in prostate cancer read it. But, there’s always a “but”.

I have often been inspired and encouraged by things I’ve read and heard over the last two years since first having the word “cancer” mentioned to me by my GP. On almost every occasion that inspiration has soon dissipated when the realisation dawns that, once again, what’s being spoken or written about is done without any thought that people like me might be affected by this disease.

The assumption always made is that a man with prostate cancer (a) must have a partner and (b) that partner must be a wife. Why?

Nick Wright’s piece was no exception. For example “The wives of the men on the programme played a key part in its success. And it soon became clear that they were having a tough time too”.

Nick, if you are reading this, my male partner of 30 years is having a hard time. He’s supported me all the way and is having to cope with the big changes in our life himself. He would also benefit from the great support you mention (and it is great support by the sounds of it). Language can be very inclusive and positive. It can also be very exclusive and negative.

As advised in the last paragraph of Nick’s blog entry, I did contact Prostate Cancer UK a few months back to see if there were any plans to start some sort of a support group in the London region for gay and bisexual men affected by prostate cancer. The reply amounted to “there’s no demand”. Apparently, there is demand in Birmingham where Prostate Cancer UK were recently looking for a support worker for a group it was setting up there.

I’m no expert on demographics, but I reckon it’d be a fair bet to say the London region has a larger population of gay and bisexual men than Birmingham and that it would follow that there’d be a larger number of us likely to be affected by prostate cancer in London than in Birmingham. Of course, it’s possible the person at PCUK who responded to my enquiry didn’t have a clue and genuinely thought London doesn’t have a large gay population. A bit like the old days when it was believed you’d only find a “homosexual” if there was a theatre in the town. For info, London has lots of theatres.

Luckily not everyone at PCUK is so totally unaware and unworldly. The organisation has recently published some excellent information for people like me – http://prostatecanceruk.org/information/living-with-prostate-cancer/gay-and-bisexual-men so there is hope.

It has also provided some help to at least one of the other two groups that have started in the UK in the last year, in addition to the one mentioned in Birmingham. A year ago there were no groups in this country for gay and bisexual men affected by prostate cancer, today there are three – the other two being in Manchester (Out With Prostate Cancer) and Greenwich in South-East London (Metro Walnut).

Our NHS still has a long way to go, too, when it comes to understanding that not all men with prostate cancer are straight. I’ve met some people in the NHS who have been instantly supportive when finding out I’m not straight. Unfortunately they’re still a minority. One Consultant genuinely wanted to know how prostate cancer was different (not worse) for a man who isn’t straight and was very interested when I explained. He is one of the people who is now attempting to start a support network in a region very near London for gay and bisexual men affected by all forms of cancer. At the other end of the spectrum I’ve had to repeatedly explain and repeat several times to the same people that “no, my wife will not be picking me up after treatment, my male partner will”. Assumptions being made are bad enough but when the same people insist on referring to my non existent wife it becomes very trying.

I didn’t used to bang the gay drum, well not as loudly anyway, but when you’re affected by something as major as cancer you tend to ask yourself why you’re still putting up with being ignored and excluded by organisations that are supposed to treat us all fairly and with dignity and respect. Having asked myself I decided I would no longer just put up with it. That’s one reason why I’ve written this.

Information on the three groups that currently exist in the UK for gay and bisexual men affected by prostate cancer can be found at the end of Prostate Cancer UK’s Prostate facts for gay and bisexual men.

When cancer is diagnosed

Tom is 72 years old and lives alone. His wife died several years ago of breast cancer. He has two children; a son who is in Australia and a daughter who lives and works in London.  Tom’s GP referred him to the Oncology department at the local hospital where he was given a variety of tests and given another appointment. He was advised to take someone with him for this visit but decided to go alone. When he met with the consultant, despite his suspicions, he was still shocked when the doctor told him he had prostate cancer.

Tom was quite unable to take in what was said to him and when he left he could hardly remember anything that the doctor had told him. He was given a lot of leaflets containing information about his cancer but didn’t feel as though he could look at them. He didn’t want to bother his children because he didn’t know what to tell them. He felt confused, apprehensive, and depressed about his future. He would have like to have had someone to talk to but didn’t feel close enough to anyone to share his feelings. One good friend, who knew of the diagnosis, gave him a leaflet about the services offered by Dorset Advocacy and offered to help him make the call for help.

HOW DORSET CANCER ADVOCACY HELPED

 When Tom contacted Dorset Cancer Advocacy, he was put in touch with a volunteer advocate, David, who arranged to meet him in his home. Tom was relieved to find David a friendly and sympathetic listener. After being assured that his privacy would be respected he felt able to tell David about his fears and concerns, mainly how to find out more about his condition, treatment and outcomes. He was also anxious about informing his son and daughter. He was unsure whether he should tell them about his diagnosis and did not want to become a burden to them. He also had financial concerns about paying for additional help, if and when they it was needed.

With the help of David, he developed a list of specific questions he had for his doctor. He and David went through the leaflets to gain more understanding of his diagnosis. He welcomed David’s offer to accompany him to the next appointment so that any remaining questions would be addressed.

 Tom then told David about his son, living in Australia, and his daughter who had a very busy life in London. Although he felt it important that they know of his cancer he did not have enough information to give them. He thought that he should know more before informing them so that he could answer any questions they had. David supported this decision and they made a list of questions about sources of help and care that were available.

Finally, David was able to provide him with a list of agencies that could address his financial concerns. He also promised to return with additional information that would be helpful to him.

They arranged to meet again and David left a contact number so that Tom could contact him should he need more help. As Tom watched David drive away, he breathed a sigh of relief. Here was someone who could be a real friend and supporter, who would understand his fears and could provide support. He picked up the phone to thank his friend for helping him make the call to Dorset Cancer Advocacy.

Janet Lister, Volunteer Advocate, Dorset Cancer Advocacy

This is what we do; it’s what this project is all about. If our application to Big Lottery’s Silver Dreams Flagship programme is successful we’ll be able to support lots more people like Tom. Wish us luck!

Prostate cancer patients should take their time to consider treatment options

This was one of the messages given by Mr Andrew Wedderburn, Consultant Urologist at the Royal Bournemouth Hospital, at a talk organised by the Friends of Ringwood Medical Centre this week.

Mr Wedderburn gave a carefully illustrated and sometimes humourous overview of prostate cancer.  He explained the risk factors, how the cancer is detected,  the pros and cons of screening, the current treatment options at various stages and what the future may hold.  In Dorset robotic surgery is already on the cards.

For those men living with prostate cancer it’s important, he said, to continue to enjoy life and not give up the things that one enjoys such as favourite foods because of the latest media coverage.  In addition, in most cases, men can take time, perhaps months, after diagnosis to thoroughly weigh up all their treatment options.  Should surgery be an option then general fitness and other health conditions rather than age would be the main consideration taken into account.

Dorset Cancer Advocacy coordinator Kathleen Gillett asked how patients might prepare themselves to get the most out of an appointment with their consultant. Mr Wedderburn recommended writing down questions the patient would like to ask in advance.  It’s also helpful to attend the appointment with a relative or friend who can listen and perhaps take notes so that one doesn’t come out thinking ‘I can’t remember what he said!’  Some patients like to record their consulation on a mobile device which is handy as long as it is with permission.  If the appointment is about getting results of a scan it could be useful to try to prepare oneself as far as possible for the different outcomes.

The support that a volunteer advocate from Dorset Cancer Advocacy could give in these situations was described to listeners by Kathleen after the talk.

Andrew Wedderburn, Anne Wilson, Patricia Farwell

Mr Andrew Wedderburn is pictured with Dr Anne Wilson of Ringwood Medical Centre and Mrs Patricia Farwell, chairperson, Friends of Ringwood Medical Centre.