Advocates relish in the words “not possible”

Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:

We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.

As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations.  All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.

Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.

Lizzie Sturm, Advocacy in Barnet

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Specialist cancer advocacy support is invaluable, even for those with family and friends…

In this post Valerie McGregor, advocate at KPAIS (Knowsley Pensioners Advocacy Information Service), tells us why it’s important that every older person affected by cancer has access to advocacy support if they want it, even those with family and friends around them:

I have recently had the pleasure of supporting a lovely lady who I shall refer to as Jane. Jane self referred into our service when she felt that she needed someone to talk to outside of her family.  Although Jane has a very loving and caring family and who are supporting her through her cancer experience, she didn’t want to burden them as they didn’t want to talk about practical matters arising from her diagnosis and prognosis.

Our first telephone conversation was about practical issues like benefits and how we could support her with form filling and making a claim, as well as information on other services which could offer practical support. I visited Jane at home to do her form and we had a long chat about everything that was important to her and what she wanted. Jane had said how nice it was to discuss matters without burdening her family.

 

Jane was very optimistic about her illness and the options available to her, but unfortunately Jane wasn’t able to have the surgery that was first discussed. As a result she now wants to put her affairs in order and generally wanted to talk about how she felt about what was happening to her, and what support we could offer her with general practicalities.

 

Jane has expressed her sincere thanks for the practical and emotional support we provided and how having a Cancer. Older People and Advocacy advocate has helped her to stay independent and in control, and asked that I stay in touch with her and visit her frequently just to have a chat and a cup of tea.

Valerie McGregor, KPAIS

Supporting Maria: Neil’s story

In this blog Neil Topping, a volunteer advocate for Oxfordshire Advocacy tells us about his support of Maria (not her real name)

BACKGROUND

My advocacy partnership with Maria, a nursing home resident began in March of this year after a referral from Social Services. Maria, a Portuguese citizen, had been diagnosed with terminal bone marrow cancer and had a life expectancy of 12 months. Some years ago, she had also been diagnosed with schizophrenia.

THE PARTNERSHIP

The partnership agreement centred upon providing support to Maria in accessing her Portuguese bank account, assisting her in managing her account on line, helping her to understand her care cost liability and reconciling her budget and providing information for her to decide on whether to sell or rent her property.  From the outset, Maria accepted that her illness was terminal and she would not be returning to her flat.

In mid-June, I attended a meeting at the nursing home where Maria decided to sell rather than rent her property and the social worker confirmed that the Council Money Management team could handle the sale. It was also agreed that she would bring a representative of Money Management to the next meeting with Maria. I agreed with her that I would also attend this meeting and that provided that she was satisfied with the arrangements being made, the advocacy partnership would conclude.

Neil Topping

 

THE OUTCOME

Shortly after I returned from my holiday, I was contacted by the nursing home manager to be advised that Maria had just died. She asked me for any information that I could provide to assist her with the funeral arrangements and in a few days we were able to piece together some details of her life and some idea of her wishes as she hadn’t made a will. I concluded the partnership having satisfied myself that the nursing home would organise the funeral and that Money Management would deal with the estate and financial matters generally.

 

CONCLUSION

The partnership was made easier because Maria understood the severity of her illness and wanted to deal with the implications. This, of course, is not always the case with those who are terminally ill. However, I learnt at an early stage that we had to let Maria control the pace of her decision making process and let her take time to understand her options. I also learnt that afternoon meetings seemed to suit her best. It may have been due to her  schizophrenia, but it took a little time for me to gain her trust. Therefore, throughout the course of our meetings, both the social worker and I asked her if she was ‘happy with the way things were going’ and how we were supporting her.

In future cases, I would check at an early stage whether or not the care/nursing home, has clear information on file regarding the clients wishes following his or her death. With cancer, life expectancy projections are difficult to get right. Those of us supporting Maria were attempting to deal with the issues facing her in a way that was sensitive and recognised her prognosis but, as it turned out, was unrealistic in terms of the time that was left to her.

by Neil Topping – Oxfordshire Advocacy Volunteer Advocate

Strange how much irony there is in life!

Lizzie Sturm, Director of Advocacy in Barnet, tells us about her new, personal perspective, of the Cancer, Older People and Advocacy Programme.

Advocacy in Barnet (AIB) are really excited to be the newest OPAAL hub member to become a Macmillan partner. Three weeks ago we held interviews to recruit a volunteer coordinator for the Barnet Macmillan Advocacy Project. The Macmillan Involvement Coordinator (North and East London), experienced volunteer and myself comprised the panel, meeting a range of candidates and spending much of the day talking about cancer pathways. I hope that people will get to meet Alex Pinnick, the new Volunteer Coordinator who starts on 16 September over the next few months.

Strange how much irony there is in life! Within a few hours our conversations about cancer pathways became personally meaningful.  My Mother (in her late 80’s) was diagnosed with lung cancer that evening. We’re now embarking on our own cancer journey with each participant experiencing their own unique impact and place in this.

It’s been a long three weeks with a myriad of emotions experienced and a lot of learning already. At every step of the way, my belief in the value of advocacy support to older people affected by cancer has been absolutely affirmed.

My parents are intelligent, articulate and independent people but they are immensely affected by this scary diagnosis and prognosis as are all the family. The medical team and nursing care have been superb but there are so many, many significant details and ramifications that need to be attended to. I am fortunate to be in a position where I can try to support them. Even as someone “fairly in the know”, there will definitely be times where I will flounder in this.

I can certainly bring in an unexpected and new perspective to the training of our Barnet Macmillan Advocacy Project. As I am sure other projects have encountered, the spectrum of issues that may require advocacy for an older person affected by cancer is enormous and I am delighted that our new Barnet Macmillan Advocacy Project will be able to make a difference.

 

Lizzie Sturm, Advocacy in Barnet

In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive

In your shoes

Helen from Sefton Pensioners’ Advocacy Centre tells us about a recent event she went to.

I attended an event organised by the local hospital trust in conjunction with Macmillan called ‘In Your Shoes’.  Advertisements had been placed in the local press and online inviting patients, former patients and carers to attend.  Pre-registration had been encouraged as the format of the day was for primary and secondary care staff to listen to each patients experience on a one to one basis and record the positive and negative aspects of their care.  The staff who attended were predominantly not dressed in uniform, had not been involved in the individual’s care and were from a range of disciplines.

Following the one to one discussion the listeners then read out the positive and negative comments.  There were many positive comments about the individual communication from all members of the multi-disciplinary team.  However there was criticism about the inconsistency within the service between oncology and the general hospital.  Many people had experienced problems with their GP not being kept up-to-date with the treatment and the patients or their carer’s were unsure where to seek the appropriate medical help.  There was a suggestion that there should be an individual who could coordinate all the treatment and be a point of liaison or alternatively that patients could be issued with hand held notes to avoid the need to repeat their medical history.  Another carer felt that a letter from the GP explaining the full situation would have improved their journey through A and E.

Helen Vernon, Sefton Pensioners’ Advocacy Centre

There was a general agreement that there was a marked difference between the regional cancer hospital and the local hospital.  The older patients felt that they had had a significantly inferior experience on the general wards where staff were more likely to be rushed, have a more negative attitude with regard to prognosis and treatment options and display less empathy.  This became one of the most significant outcomes of the listening event and the organisers intend to take this information back to the hospital board for consideration.

Those present felt that the disjointed care continued when they left hospital and that there was a lack of awareness of the correct protocols for care by the district nurses.

There were several comments made which were particularly relevant to the advocacy project.

• Some attendees felt that there was very limited or no information about benefits, local support or other services in the area
• Alternatively others were given this information but not at an early stage
• On a number of occasions the diagnosis was given to the patient whilst they were on their own
• One individual mentioned that they felt that patient’s decisions about treatment should be respected and that they should not frequently be asked if they wanted to change their mind
• Treatment options on the elderly care ward were limited as it was felt that the staff were dismissing them because they had a cancer diagnosis

A local Macmillan Involvement Officer attended the event to coordinate feedback and she spoke to the larger group about our Cancer, Older People and Advocacy project.  She was able to link a number of the points highlighted back to our cancer advocacy service which was helpful and positive.

Helen Vernon, Advocate, Sefton Pensioners’ Advocacy Centre

Margaret’s story

Recently we met Margaret Corbett during one of our Cancer, Older People and Advocacy workshops at Macmillan’s Cancer Voices Conference. This is Margaret’s story of being an older person diagnosed with cancer:

I am over 80 and a long-retired medic. Early in January 2012 my breast cancer diagnosis was made promptly, surgery, tamoxifen and a course of radiotherapy was recommended as treatment. At the end of radiotherapy I was told to expect a follow-up appointment in Oncology. Meanwhile I was invited to a specialist nurse-led group meeting. We were given a carefully prepared and designed leaflet. Topics covered included exercise, diet, lose some weight if you can, body image, sex life, risk of lymphoedema and what to do. All very good advice but I seem not to have taken it in for months, though I was living healthily and getting considerable benefit from regular exercise and significant loss of weight.

 

The treatment seemed not nearly as much trouble as I expected, but I felt mysteriously mentally distressed, a finding that I had not anticipated and found very worrying. At my first oncology follow-up appointment I was ashamed and denied any psychological problem. I had not then discovered how common it is to have such feelings. I was given a note and asked to make an appointment for a year later and I felt somewhat reassured to have the date and time firmly assigned.

 

Much of my problem has been the idea that my treatment had been ‘easy’ because of my age. I felt left out and under treated. I now believe that this was a completely wrong concept. At my first follow-up appointment I was very concerned about my prognosis. I asked why I had not been offered any form of chemotherapy. My oncologist left the room and returned with a sheet of paper showing the result of a computerized predictive tool. He said “Well, it would only make 1% of difference and it’s not safe you know”. If only he had said (without getting any printout) “We have a guiding rule here, we run this predictive tool and if chemotherapy would make less than 3% of difference we do not offer it, between 3 and 5% difference we discuss it, and over 5% we advise a course of chemotherapy”. I hope that I would have been able to accept that and I believe it would have saved me a great many bad feelings.

 

At the end of the summer I joined a Macmillan-backed Womens’ Support Group and from them was able to access a local HOPE (How to Overcome Problems Effectively) course consisting of seven sessions similar to group therapy with exercises in various calming techniques, and also, concurrently as it turned out, some sessions of counselling. The well run HOPE course worked really well for me. I was able to understand that other people had similar reactions so that I could stop feeling so psychologically abnormal. We had shared experiences and we helped each other.

 

My counselling sessions were also very helpful as I was able to identify that I have a problem with anger. It has been most helpful to know this though I haven’t done anything further about it since.

 

I would have liked more information. It would have been very acceptable on paper but, because of my undoubted denial and psychological stress, I would have liked to be offered the information more than once – perhaps even at every follow-up appointment until I could say that I didn’t need it. I now believe that treatment is offered to older patients on a basis of performance status rather than on age. I have now had the switch from tamoxifen to exemestane that was so briefly mentioned right at the beginning and I am delighted about this. There is still no written forward plan but I am less concerned than before as I do now feel carefully managed and well looked after.

 

An offer of advocacy support as part of the follow-up at the end of radiotherapy would have been very timely, though in view of how mentally strange I felt at the time I might not have accepted it. I did not ‘feel myself’ and I can’t judge how someone else would react.

 

The oncology staff do know that the end of treatment is a difficult time for many people – ‘the Lifeboat Syndrome’. Advocacy might be just the thing, possibly offered fairly firmly.

Margaret Corbett

I went to Jake’s funeral yesterday. I don’t know if it’s the role of an Advocate to attend the funeral of an Advocacy partner but I was afraid there might be nobody there.

Let me tell you about Jake as he told his story to us. A few months earlier he had been told by his cancer doctor/oncologist that his cancer of the pancreas had spread to his lungs. It was not a good prognosis but he suggested one more session of chemotherapy. He had no one to turn to for support except the doctors and nurses on the oncology team but on his way out of the hospital he passed a notice board that had a brochure describing the work of Dorset Cancer Advocacy and took it home with him and later made the call to get help.

On my first visit I found Jake in front of a giant TV screen that dominated his small living room. He told me that he had bought it as a result of his diagnosis a few months earlier. Jake told me that he had no social life and rarely left his home except for shopping and other essential trips. He only had one sister but they had quarrelled over the care of his mother and he hadn’t seen or spoken to her since. At one time he had an active social life and was involved with his church and a local tennis club but had become a recluse. He had one friend who he rarely saw and spoke to and who was unaware of Jake’s condition. Jake was truly alone.

He felt that with advocacy support he would be able to get out more, enjoy outings or clubs around his interests, and meet people in cancer support groups – “The more I get out, the more I’ll improve my health”.

Jake was directed to various social groups but even with encouragement he chose not to participate unless accompanied by someone. Meanwhile his health was deteriorating. The emerging picture was that Jake was in denial about his condition as he was spending large amounts of money to improve his house (new carpets, bathroom, stairlift) so that he could continue to live there. They were disrupting his life and his house was full of items that hadn’t been fitted.

Janet from Dorset Macmillan Advocacy

We spoke about further improvements and purchase of equipment and he decided to delay them until he got the latest reports from the oncologist.  I went with him on the day of his appointment to receive the news. He was told that the disease had progressed and further treatments were not an option. He would be referred back to the care of his GP. Jake had little to say about this news but bearing in mind his plans for his home I supported him in asking the doctor what the time scale was likely to be and he was told it would probably be a matter of months.

On the way home, Jake repeatedly said “So now we know” and I realised that we were embarking on a different kind of journey. I fixed up a meeting with the palliative care nurse to bring in the necessary support services to keep him at home but before we could implement our plans Jake suddenly became very ill and was admitted to the local hospice where he died a week later.

Fortunately the hospice had a phone number for his solicitor and he had prepared a will with instructions for his funeral. The solicitor contacted me and I told her about Jake’s old friend that he had mentioned at one point. I remembered that a phone number might be found in the house. She was able to contact the friend and I was able to tell him about Jake’s last days. His friend asked me to contact the church to see if they could locate any other of Jake’s friends and acquaintances

So at the funeral I was not, after all, alone. John’s friend was able to come, his solicitor also was there as were two ladies from the church lunch club. It was a sad affair and the vicar made the service brief, pointing out the increasing number of funerals where families are dislocated and friends are predeceased. As Jake’s advocate, I felt that I had played an important role in supporting him not only as he approached death but also afterwards.  This was worthwhile for us all.

Janet Lister, Dorset Macmillan Volunteer Advocate

Tom’s story

September 2010. I’m 62. I’m fit, healthy and happy. I’m due to fly to Nepal next month to go trekking with Lyn my wife but……………for about 3 months my bowel motions had been changing, becoming looser, sometimes very urgent. Nothing else. I suppose I’m just denying it but my wife notices blood in the toilet bowl and one could say the shit hits the fan!

So same day I am seeing my GP. He asks me the normal questions, answer is no to all of them. Then it’s “tum and bum”. I know there is no lump or pain in my abdomen. Then it’s fingers up my bum. He apologises for his rugby player’s fingers and tells me I have a lump in my rectum and he is certain it’s cancer.

I’ve been there for about 5 minutes!!!!! My life changes in an instant. My immediate reaction is that bowel cancer = death, I remember the blokes I have known who have died in the previous 18 months. I don’t think that I’m going to die, just that if you have bowel cancer it means you die if you can understand what I mean.

My GP spends the next 50 minutes with me (I often wonder what happened to the patients who were due in after me!) carefully explaining to me it’s about me not about others, what bowel cancer means, what’ll happen next, printing stuff off the Internet for me.

He was great.

Then it’s time to tell my wife – it was almost worse telling her we couldn’t go to the Himalayas than that my GP thought I had cancer.

3 days later I’m seeing a Registrar at the QE, a dead nice young lad who seems about 16. More fingers up the bum and he tells me that I don’t have a lump and he knows more about these things than my GP, but I don’t believe him.

The next Wednesday I have a Colonoscopy (for those who have never had one, taking the Piccolax preparation beforehand is an absolutely unforgettable experience!). It’s going fine, I’m chatting to the staff listening to relaxing music on my headphones. The doctor doing it says “almost finished now” and then “yes, we’ve got something here”. I look at the screen and it’s filled by this great big bright red, bloody thing which looks angry. I ask the doctor “Is that cancer?” and she says ‘It’s cancer”. There’s no talking after this but I feel strangely at peace. I know what it is and I know it can be dealt with.

I’m now part of the system. I’ve got a key worker and everything starts to happen. I have a CT scan 2 days later and then a MRI (another very memorable experience).

During all this time I was getting info off the Internet and contacting Beating Bowel Cancer so I knew everything about treatment but not what my stage my cancer was and so what the treatment and my prognosis would be. This changed when my GP phoned me on my mobile when I was taking the dog out in the woods at 8am. He had just been able to access my test results. It was GOOD GOOD. I was approx. Dukes Stage 2 (I can explain what this means), I would only need surgery and the prognosis was very good.

I have to have an Endoanal sphincter scan to give the surgeon the rest of the info he needs.  Now that’s not something I would like to have again!

So everything’s great I’m booked in for surgery – a resection – but it is very major surgery.

I have my pre-op assessment on the 10th Nov and everything is fine except I discover I will have to have an Ileostomy i.e. a stoma sticking out of my abdomen with the bag to collect my faeces, while I heal up and I should be able to have it reversed at a later date when I have healed internally. Approx. 120 people in Gateshead get a stoma every year so it’s not uncommon.

So it’s into the QE and the great day is the 15th Nov. I remember very well getting wheeled along interminable corridors thinking “what are they going to do me?” I wake up after 7 hours of surgery with tubes all over the place, an Ileostomy bag and feeling like I had been run over by a bus. Everything went absolutely to plan, pain relief was excellent but my surgeon did give me a bit of a shock next day when he told me he had so little rectum to play with he almost wasn’t able to do a resection but he was determined to do so because I was so fit and active and he wanted me to continue to do so.

Seeing my stoma for the first time and changing the bag was quite an experience. Although I had seen the photos and used the “test kit” nothing quite prepares you for the real thing.

Any way after 2 days (pretty good as I had been told I would be in for a week), it was home to recover from major surgery and learn to live with an Ileostomy.

Recovery was pretty quick but I was surprised at how knocked out I was and how long this persisted.

I saw the stoma nurses weekly for 8 weeks while my stoma healed. Tracey and Heather were great. The problem with managing a stoma isn’t in your abdomen, it’s in your head. It so different, you feel abnormal. Tracey and Heather simply helped me feel normal again. No problem.

I was told my chances of 5 year survival were 77%. Pretty good, I can live with that. But then I was offered Chemotherapy which I was told would increase my 5 year percentage by 5%. After 2 meetings with a very nice Oncologist, internet research and talking to friends who had had chemo I decided not to have it. The Oncologist himself said that in my position he wouldn’t have it.

So I accustomed myself to life with an Ileostomy and got fit and back to normal.

Tests showed that I had healed inside and I had the reversal surgery on the 25th May. Much less invasive surgery but you lose even more bowel. My surgeon had told me I would hate him for 4 weeks afterwards. I didn’t but life was very difficult and painful. Managing a stoma was much easier but I have no regrets. You are given no preparation for life after reversal. I will never have a “normal” bowel function again, but it is slowly but surely getting better. The internet tells us it takes 3 months to 2 years to get to its optimum and I had assumed it would be 3 months for me because everything had gone so smoothly before. I was wrong.

So 2 years after initial surgery where am I now? I am very fit and well (and I look it). I have my 3 monthly checks and blood tests and everything is normal. I had my first CT scan and a colonoscopy which were clear. I am cancer free and I am enjoying life.

South of Tyne Health asked me to participate in training sessions that they were doing about Bowel Cancer Awareness in September. I really enjoyed working with their trainer talking about my personal experience and giving a personal perspective to the information she was giving out. These sessions were aimed at professionals who were working with or in contact with older people. Alan Davison from Age UK was at one of the sessions. I hadn’t met Alan before. He was very complimentary about my performance, told me about the new Advocacy Project working with people with cancer and invited me to its launch.

At the launch, I was really impressed at the work that has been done in getting the project off the ground, how well organised it is and how committed and enthusiastic the volunteer advocates are who have gone through the training scheme. Speaking about my experiences and my beliefs felt like it had a good fit with the ethos of the project. I’ve met with Alan since then and I am very keen to assist with the development of the project. I hope to work as a “Champion” promoting and developing the project, assisting in the evaluation which is being carried out and making positive contributions not just from my cancer experiences but also from my work experience both in local government and in the health service.

You may remember that at the beginning of this story I was due to go trekking in the Himalayas, it had to be cancelled and how awful it was telling my wife. Well in November just gone it finally happened – we got there! I can’t describe how wonderful it felt as the plane came into Katmandu. We had an absolutely wonderful trip. I fell in love with the country and the people and we are planning for an extended trip in February 2014. Now that I have done this I really feel that a chapter in my life has been closed and I can get on with the future – but I also feel that I want good to come out what has happened to me and to help others so I look forward to working with Age UK’s Advocacy Project and other work.

Tom Kyle (January 2013)