A year on.. A message from a professional patient on behalf of the NHS

A year on.. A message from a professional patient on behalf of the NHS

This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link: 

https://stellavig.blog/me-and-my-acoustic-neuroma/

I have had a wonderful but difficult year since my operation on February 27th 2017. I have celebrated my 50th birthday, my son’s 21st and had a great Christmas and New Year! I have reread my thoughts from a year ago and they are still fresh in my mind but almost feel like those of a different person.

I now realise that I should have listened to my Surgeon and my Husband! (sshh don’t tell him that!) during my recovery as they had realistic timelines for my recovery. I needed to go back to work to escape being a patient and challenging myself to be a professional again. I was lucky to have an employer that valued me and allowed a prolonged phased return to work. I went back on call early, despite advice, as I needed to prove to myself that I could do it! I was exhausted most of the time but this improved slowly.

I finally feel almost back to normal. I still get headaches and balance issues if I get too tired, especially at night. This has made me redefine my abilities and resilience, a process which is so frustrating. It is impossible to multitask in the way I used to but I have developed strategies to cope with this and my friends tell me they can’t see a difference.

My hearing has not improved and I cannot localise sound at all. My kids find this very amusing but it is so annoying. If someone asks me a question when I am giving a talk, I cannot see where they are and cannot hear where they are either! I have to declare my hearing up front to the audience so that they can let me know where they are. My hearing has also become an important part of the WHO checklist in my theatre. This ensures that everyone is aware of anything that might cause a risk in theatre and ensures that theatre staff do not whisper into my right ear! It is really funny when I sit in meetings and the person to my right whispers something into my ear and I have to do a 180 degree turn to find out what they are saying!! Not discreet!

The follow-up scan confirms that although there is a small sliver of residual tumour, it is still benign and not growing. Full resection was sacrificed to ensure that I still have a working facial nerve which was most important to me. It has been confirmed that I will need ongoing scans but at longer intervals and that these can be carried out locally rather than travelling up to Oxford.

The original acoustic neuroma was 3cm in size and although this has gone, I have gained so much experience to guide me to deliver patient care.

I had only been in hospital before with the birth of my two children and needed care when I developed a ruptured anterior cruciate ligament (and was on crutches for 9 months). My other experience was as a daughter with both my parents needing acute care provided both locally in North Wales and in London. My father died two years ago at 91 and required carers as well as acute recurrent care. Although I thought that this and working in the NHS itself allowed me to deliver patient focused patient care, I still had much to learn. I am now still learning and hope to role model and teach this to my trainee colleagues.

The amazing Elizabeth O’Riordan, a Consultant Breast Surgeon who herself developed breast cancer recently said’ The one thing I have learnt through being a breast cancer patient was that I knew nothing about what is was like to live with breast cancer although I had spent 20 years studying it’.

I felt that I was enabled to seek the advice I needed, to consider and develop my thoughts and decisions with regard to my treatment. I hope that this is what I have already practised for many years, giving my patients all options open to them and helping them decide what they wish to do. I am often asked ‘ what would you do?’ and explain that I cannot give them this answer. I found myself asking the same question of my Surgeon but also of my colleagues and getting the same response.

What I had underestimated was the impact on my family and friends. I could not have asked for better care and positivity from them. My current and previous trainees were wonderful and kept me buoyant. My husband, children and siblings were amazing and helped me to recover quickly. My close friends got me up and walking and fed me, my next door neighbour visited daily, more than I would ever have expected. They all rallied around and I just cannot say thank you loudly enough and owe them so much.

My husband was involved in all my decision-making and never once told me that I was wrong. He was able to give support as he had been involved in my consultations and asked questions that helped. We are always taught that if a patient is competent that they can make their own decisions about their care. I was competent and a professional and still needed support to make my decision. Healthcare professionals understand that when we break ‘bad news’. normally cancer diagnoses, that support, often with nurse specialists, is of benefit. Patients are encouraged to bring an advocate with them, not only to support them but also to remember what was actually said and not what the patient wishes to remember. I was given leaflets and advice but learnt so much through the blogs of others and social media. Liz O’Riordan comments on the same. Maybe we should encourage our trainees to reach out to these sites to understand the patient journeys that they start their patients on. A nursing colleague has used my blog in her teaching for her junior staff and I have had many people reach out to me on behalf of themselves as well as relatives, just as I reached out to those who had gone before me in various Facebook groups.

So how do people who are on their own access support? Or those who are not IT literate?  How do healthcare professionals support these individuals if they are on a benign journey rather than one that is supported by cancer nurse specialists?

When I was in hospital, my family were able to be with me and my inpatient time was short. I valued the ability to talk to them and they were reassured by my improvement and desire to get home! Current governance does not allow healthcare professionals to discuss patient details over the phone with relatives unless consent is given. In addition, with nursing and medical staff shortages, often the teams are busy or not available when relatives come in to visit after they have finished work. I have witnessed families feeling lost as they are unaware of what is planned for their relatives, when they visit in a weekend and are told that they need to wait until their team comes back in. Patients may not even be aware of who is the attending Clinician as many teams buddy up care and rotate on a daily or weekly basis. This is where I have really tried to change the way that the teams and I behave. Patients and their relatives need to be engaged in decision-making including timing and dates of treatment and discharge.

In surgery, this process is easier as one can normally judge the time needed to recover in hospital. In medicine, this is much harder as most inpatients are admitted as emergencies and many in crisis, due to a paucity of social care and mental health funding. We often say that discharge planning should be started as the patient enters the hospital but due to staffing and pressures within the system, this may not happen. This may lead to inefficiencies and patients staying a day longer than expected but with the reduction in the NHS bed base, each day and hour matters. All patients should have an estimated date for discharge as they are admitted allowing everyone to plan accordingly.

In a system that is not fully resourced, healthcare clinicians are struggling to provide excellent patient care and this shows with the recent dissatisfaction for the first time with the NHS.

The public and politicians need to decide what they want to do to resource the ever expanding need for healthcare. I received excellent care from my clinicians despite being treated in a Trust recently placed in special measures. The compassion and communication encompassing my care was excellent and enabled my family, friends and I to return to normality rapidly.

Communication is an enabler within the NHS and healthcare professionals need to ensure that this is embedded at every level despite funding and time issues.

The NHS will only survive if we value our staff and ensure that this is both in morale and salaries. There is also a need to empower our patients to regain independence as much as they are able and understand the health choices that they make and encourage them to be the decision makers.

Stella Vig, an NHS Enthusiast and Survivor

 

 

 

 

Deja Vu? My post from Feb 2017 #NHScrisis

Deja Vu? My post from Feb 2017 #NHScrisis

The national headlines recently have been alarming.

Hundreds of patients have had operations cancelled, many more than previous years as the NHS Crisis continues.

The John Radcliffe Hospital cancelled all non-urgent operations in Jan 2017 and is quoted as one of highest pressured Trusts.

These are just statistics and each data point represents a patient and their personal circumstances. As a NHS, we cancel patients every day and just shift them along a few days or weeks. These are difficult management and clinical decisions but must be taken as the NHS juggles elective and emergency care in the under resourced and under bedded NHS. However these patients are people and the NHS should not be in this position.

We try and ensure that patients with a cancer diagnosis are not cancelled nor patients with special circumstances or who have been cancelled before but the NHS cannot guarantee that this has been 100% delivered this or last year.

I do not have a Cancer, I am not an urgent or an emergency so I could wait if necessary. And I will if needed and I will understand. And the anxiety will increase just like any other patient. At best I will be cancelled one week, at worst…

And there is a huge personal cost to this wait, that is hidden from the NHS deficit. Each patient carries a personal cost, which is relatively small, but added up across the nation, must be huge.

Personally, I have suspended my work and have only just managed to finalise the business cases, delegated tasks and ensured I have handed over both clinical and managerial duties. I have planned a return to work date and the Trust are paying for a locum to cover me. Any delay with the date of surgery pushes that return date back as well as increasing the cost.

My husband has booked a week off work and has planned operations and appointments on his return. If my surgery is delayed, then these patients will either need to be delayed or a plan made for others to cover if possible, often on goodwill but potentially at a cost. He has booked somewhere to stay for a week and has paid up front. This is not available the week after and he will need to rebook and pay a further cost and will lose the money for the first week.

My sons have given notice at University for one week and have booked tickets and accommodation.

My sister has delayed a business trip and has planned to be around me initially and has arranged accommodation with my brother. She has arranged flexible leave with her company and will travel as necessary. My brother is flying in from abroad and is here for two weeks. He cannot rearrange his flight without a cost to him. He has also had to plan his work around his absence for a few weeks. All are using their precious annual leave. They don’t need to come but we lost our father last year and mother many years before that. As orphans, siblings bond even closer together and we have always been a great family unit.

I can be delayed safely and will not publish this until after my surgery as I do not want any special treatment.

I was supposed to phone at midday today but got a phone call at 11am telling me there will be a hospital bed. I am overjoyed as this is the first step. I can be admitted at 4pm and need a further CT scan to ensure that there is no change since my last scan.

I have naseptin, a nasal antiseptic containing chlorhexidine which causes an acute sniffly nose and I am sneezing everywhere! I am worried I might get cancelled by the anaesthetist but she sees me that night and tells me not to worry.

I am seen by the on-call registrar who informs me that there are 6 ITU beds for the morning and although he cannot guarantee a bed, things are looking good.

Lying in bed on the eve of surgery is scary. There is no going back once the operation is done. I will need to work hard to rehabilitate and get my balance and appetite back. I have read all the literature and have kept myself as busy as I can so I don’t think about it. I have washed in the special soap and will stop eating at midnight as well as stop drinking at 6am. I am dreading the surgery but know it needs to go ahead, so have signed the consent form.

I will not know whether there is a bed until tomorrow morning. I don’t know if any of you have seen the television true series called ‘the Hospital’. A gentleman was taken to theatre and was prepared for theatre with the access lines, catheter, monitoring etc and was cancelled at the last minute. My heart went out to him and his family as this is just not fair. I know that even if there is a bed that this could be cancelled at last minute and this fills me with fear.

I will wake up early and have a shower. I will follow all the instructions given to me and behave like a good patient. I have plenty of time now as I have nothing else to do. It is an odd time as the family are not here, I am a patient in a bed with nurses and patients around me. I am an ordinary person, stripped of all identification of who I am, waiting patiently for an ITU bed that will allow my surgeon to go ahead with necessary surgery.

I feel sorry for the staff, surgeons and managers who have no real ability to manage this bed resource as it depends on the acuity of admissions overnight. Is the NHS funded correctly, are we using this resource wisely, is there enough social care funding to allow flow through the hospital, should we separate elective and emergency care? I don’t know but there is a NHS Crisis right now and I am now on the other side seeing it for myself.

Happy New Year 2018 from a NHS Survivor!

Happy New Year 2018 from a NHS Survivor!

Happy New Year!

It is amazing how time passes faster the older you get. It seems like yesterday that we were celebrating New Year’s Eve 2016. It was a quiet one as we were not sure what the following year would bring in terms of my personal health and whether I would be able to return to the job I love, working as a Surgeon in the NHS. We had just told the children of my diagnosis, fearful of their reaction and with the optimism of youth, they were not worried at all!

The appreciation for life also becomes more profound. Family and friends have passed last year and many new ones were born. The grief is intense on losing those who are close, and although people always tell you that time will heal, this is not understandable until you go through it yourself. The grief fades into the background but the memories become more striking with time. They become triggered by the most odd things: scents, foods, colours, words amongst so many things and the menories make you laugh or cry at the most insane moments.

And there are so many memories. I remember celebrating New Year’s Eve with my parents, brother and sister. We would all stay up until Big Ben chimed and then my parents would send us all to bed. As the years passed, we would have to try to keep our parents up until midnight with increasing difficulty.  We have done the same with our children. Watching the London fireworks has become a tradition as has phoning our nearest and dearest. Communication has enabled connections across the world in seconds compared to the old airmails that Mummy would send to India that would take several weeks. These are the times when I really miss Mummy and Daddy. They both continue to give me a drive for life and enable the success and health of others.

I cannot thank the NHS enough for my care last year. I would not be here, back to working, without the excellence of the team at Croydon University Hospital who diagnosed my acoustic neuroma or the skill of my neurosurgeon at the John Radcliffe in Oxford. The care I received was without reference to my background, wealth or culture. How many countries can boast such an altruistic system. It never crossed my mind to seek private healthcare as I knew I would get the best within the NHS.

I am proud to be working in the NHS. I see my colleagues, in all aspects of healthcare, working so hard with the scant resource, trying to ensure that patient care is delivered to the highest standard possible. Time is precious and there is no doubt that there is waste and inefficiency in the system but most of us spend our time firefighting, trying to manage the crisis caused by targets which do not allow longer term planning. Change is being forced centrally at pace and there is no time to evaluate whether this really will be to the benefit of the NHS and the patients it cares for.

The junior doctor dispute was bitter as was the decision to withdraw bursaries for those who wish to pursue roles within the NHS, often as a second career. It sent a clear message to the workers: those who manage the NHS do not value their staff, they are not thought to be integral to the NHS, as people who invest their careers in one company for a lifetime but rather as expendable workers. No wonder so many have left the NHS or changed their allegiance to a different country or even to Scotland or Wales. Brexit has added to these pressures as we have already sent out the message that we do not value our EU colleagues although they are the backbone of our NHS.

NHS-area-of-work.jpgThese decisions have culminated in a system where there are gaps at so many levels within the NHS. In an effort to make the money go further, there is a cap on locum and bank pay and spend for medical and administrative staff. The NHS needs to cap the salaries of non medical NHS staff in the same way to ensure parity. Those who are still working in the NHS are covering these gaps by working innovatively to ensure patient safety but this cover has now become a struggle.

Consultants are being asked to cover registrar shifts, trainees are missing training opportunities and the NHS has lost the ‘firm’ structure that ensured that we all worked in teams, allowing emotional support, debriefing and rapid feedback. Nurses are staying beyond their shift times to help support colleagues with sick patients and all staff within the NHS are contributing free hours as many of us are altruists and cannot see patient care being compromised.

There are limits to what can be achieved within the cash envelope which is NHS funding. The winter crisis of 2017/8 has been and continues to be difficult to cope with. The NHS does not do Christmas or New Year holidays, everyone keeps the ship running, with relentless targets for cancer and elective care needing to be met. There have been surges of emergencies for many Trusts, due to increasingly sick and frail people as well as those who have self-inflicted the need for NHS care. Mental Health provision is extremely challenged and ambulance services ensure these people find a safe provision of care which is often the acute sector, often at a time of crisis rather than semi elective care. GPs are on their knees and there are reasons that trainees are not choosing to follow this profession and decide on portfolio careers to allow a pressure valve when the NHS becomes too hard. The extra winter funding is a start but without funding for community care, this does not improve the flow through the acute sector. Most Trusts are in deficit and will not achieve the impossible financial control targets and even the John Radcliffe Hospital, a world-renowned centre of clinical excellence, is struggling financially. The NHS is spending millions on turnaround teams and consultancy firms, perhaps we should pay the internal staff better and allow them to get on with running the NHS well.

I am proud to be back in my job, working as a clinician and a manager. I see the skill of colleagues in clinical and managerial practice, trying to balance excellence with finance. We need to make a decision soon as to what we want. The NHS achievements over the last 70 years have been astounding but are costing more and we are all living longer and expecting more.

DSNcxJ1WkAAsPPK

From an aspiration of care delivered without cost at the patient face in 1948, the only cost implemented is that of prescription charges but even this has exceptions for those in need factored in. Do we now need to think about charging? Or just changing the way we respect the care that the NHS gives? The NHS gives freely, Grenfell, the Bridge attacks, Manchester. Each time the NHS has to deliver excellence, it does. Perhaps the public need to give excellence too.

Why do people fail to attend hospital appointments, even dates for surgery. Each of these episodes costs all of us already but we just don’t see it. Recently, I have witnessed bookers trying to persuade patients to take dates offered for surgery, to be told that these are not convenient as they have social plans. Really?

Each NHS user should be asking how they can do their bit to use the NHS resource as well as they can. Trainees sent out to accompany ambulance crews were shocked at the number of calls for inappropriate reasons but also as to the number of frail, elderly people or those with mental health problems, just about coping at home until that final straw breaks the unstable status quo. Have we stopped being a compassionate society where we looked in and knew the neighbour next door?

I am looking forward to working in an NHS to the end of my career and will continue to invest in it as it has in me. I have loyalty to the NHS as in the past it had loyalty to me. Our younger trainees and staff need to feel valued now as do the Senior Staff who are the memory and innovators of the NHS.

To allow it to succeed, the NHS needs to be unshackled from many of its targets that have become beasts that need to be fed. The fines that are applied for missing targets need to be reviewed: we should be learning not being penalised for processes that need improvement. The question of finance must be addressed this year and a cross party working group may enable how we can continue to deliver a NHS that we are all proud of.

I am looking forward to this year, looking forward to getting my strength and health back to normal. Learning to cope with my hearing loss and ensuring that I develop a new work life balance. I am looking forward to my 50 (again) birthday this year as well as the 70th birthday of the NHS on the 5th July.

I have had another chance at enjoying my family, my work and continuing to chase my dreams. Let’s work together to give the NHS that chance.

This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link: 

https://stellavig.blog/me-and-my-acoustic-neuroma/

Happy New Year 2018 from a NHS Survivor!

Happy New Year 2018 from a NHS Survivor!

Happy New Year!

It is amazing how time passes faster the older you get. It seems like yesterday that we were celebrating New Year’s Eve 2016. It was a quiet one as we were not sure what the following year would bring in terms of my personal health and whether I would be able to return to the job I love, working as a Surgeon in the NHS. We had just told the children of my diagnosis, fearful of their reaction and with the optimism of youth, they were not worried at all!

The appreciation for life also becomes more profound. Family and friends have passed last year and many new ones were born. The grief is intense on losing those who are close, and although people always tell you that time will heal, this is not understandable until you go through it yourself. The grief fades into the background but the memories become more striking with time. They become triggered by the most odd things: scents, foods, colours, words amongst so many things and the menories make you laugh or cry at the most insane moments.

And there are so many memories. I remember celebrating New Year’s Eve with my parents, brother and sister. We would all stay up until Big Ben chimed and then my parents would send us all to bed. As the years passed, we would have to try to keep our parents up until midnight with increasing difficulty.  We have done the same with our children. Watching the London fireworks has become a tradition as has phoning our nearest and dearest. Communication has enabled connections across the world in seconds compared to the old airmails that Mummy would send to India that would take several weeks. These are the times when I really miss Mummy and Daddy. They both continue to give me a drive for life and enable the success and health of others.

I cannot thank the NHS enough for my care last year. I would not be here, back to working, without the excellence of the team at Croydon University Hospital who diagnosed my acoustic neuroma or the skill of my neurosurgeon at the John Radcliffe in Oxford. The care I received was without reference to my background, wealth or culture. How many countries can boast such an altruistic system. It never crossed my mind to seek private healthcare as I knew I would get the best within the NHS.

I am proud to be working in the NHS. I see my colleagues, in all aspects of healthcare, working so hard with the scant resource, trying to ensure that patient care is delivered to the highest standard possible. Time is precious and there is no doubt that there is waste and inefficiency in the system but most of us spend our time firefighting, trying to manage the crisis caused by targets which do not allow longer term planning. Change is being forced centrally at pace and there is no time to evaluate whether this really will be to the benefit of the NHS and the patients it cares for.

The junior doctor dispute was bitter as was the decision to withdraw bursaries for those who wish to pursue roles within the NHS, often as a second career. It sent a clear message to the workers: those who manage the NHS do not value their staff, they are not thought to be integral to the NHS, as people who invest their careers in one company for a lifetime but rather as expendable workers. No wonder so many have left the NHS or changed their allegiance to a different country or even to Scotland or Wales. Brexit has added to these pressures as we have already sent out the message that we do not value our EU colleagues although they are the backbone of our NHS.

NHS-area-of-work.jpgThese decisions have culminated in a system where there are gaps at so many levels within the NHS. In an effort to make the money go further, there is a cap on locum and bank pay and spend for medical and administrative staff. The NHS needs to cap the salaries of non medical NHS staff in the same way to ensure parity. Those who are still working in the NHS are covering these gaps by working innovatively to ensure patient safety but this cover has now become a struggle.

Consultants are being asked to cover registrar shifts, trainees are missing training opportunities and the NHS has lost the ‘firm’ structure that ensured that we all worked in teams, allowing emotional support, debriefing and rapid feedback. Nurses are staying beyond their shift times to help support colleagues with sick patients and all staff within the NHS are contributing free hours as many of us are altruists and cannot see patient care being compromised.

There are limits to what can be achieved within the cash envelope which is NHS funding. The winter crisis of 2017/8 has been and continues to be difficult to cope with. The NHS does not do Christmas or New Year holidays, everyone keeps the ship running, with relentless targets for cancer and elective care needing to be met. There have been surges of emergencies for many Trusts, due to increasingly sick and frail people as well as those who have self-inflicted the need for NHS care. Mental Health provision is extremely challenged and ambulance services ensure these people find a safe provision of care which is often the acute sector, often at a time of crisis rather than semi elective care. GPs are on their knees and there are reasons that trainees are not choosing to follow this profession and decide on portfolio careers to allow a pressure valve when the NHS becomes too hard. The extra winter funding is a start but without funding for community care, this does not improve the flow through the acute sector. Most Trusts are in deficit and will not achieve the impossible financial control targets and even the John Radcliffe Hospital, a world-renowned centre of clinical excellence, is struggling financially. The NHS is spending millions on turnaround teams and consultancy firms, perhaps we should pay the internal staff better and allow them to get on with running the NHS well.

I am proud to be back in my job, working as a clinician and a manager. I see the skill of colleagues in clinical and managerial practice, trying to balance excellence with finance. We need to make a decision soon as to what we want. The NHS achievements over the last 70 years have been astounding but are costing more and we are all living longer and expecting more.

DSNcxJ1WkAAsPPK

From an aspiration of care delivered without cost at the patient face in 1948, the only cost implemented is that of prescription charges but even this has exceptions for those in need factored in. Do we now need to think about charging? Or just changing the way we respect the care that the NHS gives? The NHS gives freely, Grenfell, the Bridge attacks, Manchester. Each time the NHS has to deliver excellence, it does. Perhaps the public need to give excellence too.

Why do people fail to attend hospital appointments, even dates for surgery. Each of these episodes costs all of us already but we just don’t see it. Recently, I have witnessed bookers trying to persuade patients to take dates offered for surgery, to be told that these are not convenient as they have social plans. Really?

Each NHS user should be asking how they can do their bit to use the NHS resource as well as they can. Trainees sent out to accompany ambulance crews were shocked at the number of calls for inappropriate reasons but also as to the number of frail, elderly people or those with mental health problems, just about coping at home until that final straw breaks the unstable status quo. Have we stopped being a compassionate society where we looked in and knew the neighbour next door?

I am looking forward to working in an NHS to the end of my career and will continue to invest in it as it has in me. I have loyalty to the NHS as in the past it had loyalty to me. Our younger trainees and staff need to feel valued now as do the Senior Staff who are the memory and innovators of the NHS.

To allow it to succeed, the NHS needs to be unshackled from many of its targets that have become beasts that need to be fed. The fines that are applied for missing targets need to be reviewed: we should be learning not being penalised for processes that need improvement. The question of finance must be addressed this year and a cross party working group may enable how we can continue to deliver a NHS that we are all proud of.

I am looking forward to this year, looking forward to getting my strength and health back to normal. Learning to cope with my hearing loss and ensuring that I develop a new work life balance. I am looking forward to my 50 (again) birthday this year as well as the 70th birthday of the NHS on the 5th July.

I have had another chance at enjoying my family, my work and continuing to chase my dreams. Let’s work together to give the NHS that chance.

This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link: 

https://stellavig.blog/me-and-my-acoustic-neuroma/

December 25th 2017

December 25th 2017

It is Christmas Day and I so grateful to be celebrating this with my family. Our thoughts are not of religion but of family and love. We miss those who are no longer with us and celebrate the arrival of new bundles of joy. As we get older we realise that richness is not money but safety, health and well being. There is also great sadness realising that there are so many people who are not safe and have no access to healthcare.

Today of all days, just hug or talk to that someone special.

I want to say a special Merry Christmas to all of you. Thank you all for just being you!

With much love Stella

 

Post Acoustic Neuroma Surgery: 75% ish

Post Acoustic Neuroma Surgery: 75% ish

This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link: 

https://stellavig.blog/me-and-my-acoustic-neuroma/

I am back at work! And I am exhausted.

I was so desperate to get back to work. And I managed to get back at month 3 and a half!

When do you know it is the right time? I don’t know. I had an occupational health check and was told to start on half a day per week! I managed to negotiate this to a day per week and then to phase it as I felt fit. We agreed that I was to start on administrative and management duties only, then build on the clinical and eventually start operating, which I will do in the next week (first week in September).

I look in the mirror and I see an older but normal me but I know that I am not really back to normal. One of my colleagues stated that ‘once you let air to the brain, it is never the same again’. It certainly feels like my brain has shifted in the way that it works and I really hope that it will go back to normal. I have to write thoughts down and am constantly texting myself lists so that I do not forget anything. My brain does not switch off at night and I am struggling to sleep well. I find that my balance does change when I am tired and I get tired very quickly. It is difficult to moan as there are many people in the Facebook group who are still off work at 6 months and really do not feel able to start back as yet. They have had occupational health visits at home and describe the feeling of not being believed as to how they feel, as they look normal and have to explain their headaches, dizziness and fatigue.  Everyone is so different and you are the only one who will know what is right for you.

Others in the Acoustic Neuroma support groups also talk about the travel insurance policies, which are shockingly high pre and post surgery, which might be expected. Acoustic neuromas are very slow-growing and if found when small, can be managed on a watch and wait policy. I was shocked to find that these patients are also having to pay a much higher insurance policy even though the medical risk is very, very small. I am sure we need to educate the insurance policy makers that these acoustic neuromas cannot just be included in the ‘brain tumour’ category!

Being back at work is strange as I am not really responsible for the patients on the ward as there is an excellent locum covering my duties. I am picking up my Clinical Director duties and it feels as if I have never been away. The NHS finances are very tight, there is no doubt that we need investment but it is our duty to make sure that we use the public purse well. Even thought the NHS is stretched so thinly, the NHS family are desperately ensuring that this disinvestment does not impact on patient care and safety and I feel very strongly that this aspect should not be compromised. I enjoy the budgets and business part of the NHS as much as looking after my patients and trainees and it is actually quite nice having protected time to do it as well as I can.

I keep getting hugs and well wishes from my trainees and also from my patients who spot me in the corridors of the hospital. Each time this happens it reminds me how lucky I am to be working in Croydon, where most patients who live in Croydon come to Croydon University Hospital and so you get to know people really well over 14 years! My colleagues are shocked that I have come back so early and have been very protective of me but yet so supportive. I still keep getting flowers!

Whilst life inside the hospital does not seem to have changed very much, life in the real world has been a whirlwind.

In the last three 3 months, there has been a General Election. I watched with excitement as the NHS became a political ‘hot’ topic again and really hoped that whoever won, there might be a change in the future planning of the NHS and then was very disappointed to see that there is no real change. There appeared to be a public movement to ensure that the NHS remained publicly available and accessible in the way it was founded and I hope that this continues. This was palpable at ‘The Specials’ concert that I attended with my family. They were amazing but the NHS was central to the banter between the crowd and the band. If you have never heard of the Specials, then take time to listen to one of their tracks over the weekend! Lots of memories from my childhood.

And then there was the Grenfell tower fire. I have never seen anything like it. I was interviewing when I first heard about it and was shocked to see the extent of what had happened so quickly. I am sure my emotions just copied everyone else. I was brought to tears on hearing and seeing the horrific events that unfolded, amazed and proud of the people in this country who just came out to help and saddened by the lack of organisation demonstrated by authorities at the time. I started crying seeing the mountains of donations and realising that there were so few survivors to actually claim them. The shocking revelation as to why the fire may have gripped hold so quickly followed by the assessment of so many towers across the UK just brought home the message that we need to manage the public purse but not by putting people in harm’s way. The haunting image of the firefighters sitting exhausted against the backdrop of Grenfell tower with tears in their eyes will remain imprinted in my memory forever.

There have also been two tragic attacks in London and the attack in Manchester.  I had friends and trainees involved in the care of the London victims. The toll on the victims and their families cannot be imagined. There is also a toll on the Emergency Services and the NHS staff who also need debriefing and will take time to come to terms with what they have seen.

I went for a drink with my sister in a London roof top bar. We spent a lovely evening in the sun and I had my first drink of alcohol since my surgery. As we both looked out across London’s skyline and the bridges that span the Thames, we could not stop feeling saddened at the events of the previous weeks and of Manchester where innocent adults and children had become victims of a war that has not been declared officially but had become an entity insidiously.

Even though these events had occurred so recently, it was great to see London alive and kicking. We will not give up our liberties and way of life through fear and violence!

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I also spent a great evening with friends in Twickenham at a restaurant ‘Mosaico’. It is a lovely Italian restaurant and I went with friends from across the world. We sat and ate gorgeous food, drank wines imported from the globe and listened to Jazz music played by a Brazilian group. This is how we should be living, enjoying the best of all cultures and respecting that there are differences amongst us all but that they CAN be overcome.

 

 

 

Heels On: Week 12 post Acoustic Neuroma Surgery

Heels On: Week 12 post Acoustic Neuroma Surgery

This is a series of blogs starting from the day I was diagnosed with an acoustic neuroma. If you want to start at the beginning then please follow this link: 

https://stellavig.blog/me-and-my-acoustic-neuroma/

Weeks 6 to 12

Determination has now taken over from Frustration. I need to set myself daily tasks that MUST be completed by the end of the day.

Scented flowers, some of which I have never seen before, seem to be a feature of my recovery and continue to arrive! I know in the future the hint of flowery perfume will transport me back to this time. When my mother passed, I inherited all her beautiful silk saris, some handpicked by my father as wedding gifts. They have their own place upstairs and whenever I open that wardrobe, I can picture my mother wearing each sari to a cherished special occasion. I can also imagine Mummy standing beside me as the waft of perfume that my mother used to wear hugs me.  Somehow that wardrobe continues to provide comfort. The saris are classically beautiful and vintage, some embroidered with gold and silk threads, they will be worn again and again and then handed down but only I know their true worth.

I have dried all my flowers and have started making items for a charitable sale in the future. It is a healing activity. I have to concentrate and plan each frame. It is detailed work and makes my headache return each day but I feel a real sense of achievement every time I finish one. My sister posts a finished frame onto her social media site and I get a sale!! How exciting. Now I am spurred on! My collection is growing and I will arrange a celebratory gathering in the future with an aim to raise money by selling all my wares.

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Life is normally so busy and it is rare to get a chance to slow down. This illness has forced me do so. My two children bought me a beautiful painting set at Christmas pointing out that I used to love to paint and suggesting that this forced time off work would be a good time to restart. I have had the wooden chest containing the oils and watercolours out for several weeks but have not had any energy to get going. I now start slowly and rediscover the joy in painting. Why is it that we get so consumed with work and children that everything else is put aside. Or maybe it is just me.

I have my first check up at the John Radcliffe. I get up early, get dressed and actually put some make up on. I look okay and decide that I need some wedge heels to complete the look. This will be the first time since my operation but I am determined to manage my heels today. I wear flats in the car but change to heels walking to my outpatient appointment. There is a notion that suggests that what patients wear changes the patient’s perception of illness as well as the clinicians’ thoughts on discharge. Pyjama paralysis is the term used to describe the inertia that creeps in when you are in pyjamas even when you are in your own home. And this gets much worse in hospital. One of my previous Consultants used to say that if a patient (female) had lipstick on then they needed to go home. As trainees, spurred on by this, we would encourage our patients to put lipstick on to persuade this Consultant to send a patient home when the patient was desperate to do so!

My sister reminds me to write down any questions I may wish to ask as I will get distracted when I get to see my Surgeon. I know the two most important ones. I really, really want to start back at work and would love to drive again.

Thinking of my current inability to drive takes me back to the time when I really disappointed my Daddy. At the age of 88, he was still driving but was becoming unsafe (in my opinion). I felt that he really should stop driving but knew that this would take away his independence. We did discuss this as a family, all of whom agreed, but I was the one who had the conversation with him. He was so irritated by me and it was only when we promised that we would take him for an independent driving test, that he agreed to consider this any further. The driving test was as expected and the team felt that Daddy could drive but only in the daytime and only to and from a limited number of destinations (all very close). They messaged this so well that Daddy felt empowered to make a decision that if he was not a 100% safe that it was probably better not to drive. I learnt many lessons about communication that day!

My sister drove me to the John Radcliffe and the trees en route have never looked so good. The cherry blossoms are in bloom and seem to have peppered all the hedgerows as we travel to Oxford. I have many pictures planned in my mind when I next find an opportunity to paint. Talking to my sister, I realise that I am struggling with the right-sided deafness which is worse than I ever expected. In quiet conditions or in a one to one conversation, I am fine. In the car, with music on, I struggle with hearing my sister clearly and I am sure that this in itself makes me feel tired. My facial movements are completely normal but I have a very dry right eye but because I keep rubbing it, I have developed great bags underneath this eye that no amount of eye cream will improve. My balance is manageable and I know that this will get better. The tiredness and inability to hold multiple thoughts is frustrating but now expected and I will just have to manage. I have started texting myself everytime I remember something I need to do otherwise I forget.

I have joined many Acoustic Neuroma groups and feel guilty reading posts from others. I have been so lucky post operatively whilst many fellow patients have not. Surgeons are skilled clinicians but my father was always the one to point out that ‘no matter what a surgeon does, Mother Nature is responsible for healing’. I managed to escape in the healing process without any major complications so certainly all the good wishes and prayers sent to me, worked.

I follow the progress of ordinary people like me who have undergone surgery previously or in parallel to me. Some have made the same progress as I and I laugh when I see that our milestones and frustrations have paralleled. Others have had a much slower and debilitating progress. I cannot tell you how lucky I feel but I have to put myself in the shoes of others whose whole lives have been turned upside down. Some have had significant facial disfigurement and are wondering out loud on social media how much recovery they will have. Others are still nauseated and very unbalanced. Others are six months out of work and are still struggling even with a phased return to work.

Every Surgeon that I know goes to work aiming to improve the lives of their patients rather than cause life changing events through surgery but complications happen in all of our hands even when surgery is really straightforward. This is why we ensure our patients are consented fully and are aware of  what might happen. I do this every day I practice but the absolute gamble as to whether YOU are the one who will encounter these problems cannot be foretold and I had completely underestimated the anxiety that this causes.

I attend my outpatients with my Surgeon. I think he is pleasantly surprised when I walk in. I still look a wreck despite my make up as my hair has become white. On men this looks distinguished, on a woman, well I just look old. He is pleased with the scar although this is still healing. I explain that I wish to dye my hair and although he agrees, his Nurse Specialist suggests that I wait another two weeks until the scar is fully healed. He knows that I am keen to go back to work and suggests a phased return at three months. He warns me that I will continue to be tired and I explain that I really believe him now.

The Surgeon and I had discussed the compromise of leaving some neuroma behind in order to maximise the preservation of the facial nerve. I have already had my follow-up MRI last week and we go through the scan results together. There is a 5mm residual part of the neuroma wrapped around the facial nerve which is very easy to see. It will need monitoring and if it grows, it may need cyberknife therapy in the future. My Surgeon explains that I will need another scan in October. That is a long time away and I forget about it. He is happy that I can start driving when I feel ready and when looking over my right shoulder stops hurting my neck. I feel like I am almost back on track.

I am so elated that I go shopping into Epsom the following day with my neighbour. I wear flats and enjoy looking around. But this is too much, too quickly. My body tells me to slow down and I fall asleep exhausted in the early evening.

I seem to be making steady progress and I reevaluate my previous commitments. I had enrolled in the Kings Fund Senior Clinical Leaders course and originally decided that I would not attend module 2 as I would not be up to it. I had not made any promises to myself after desperately wanting to attend the Association of Surgeons in Training conference at week 6 and really just being so naive at thinking I would be able to make it! I feel that I could attend the Kings Fund if I get a taxi and sleep there and back. I get my hair dyed as soon as I can so that there is some semblance of normality and I feel back in control. The course is excellent but I cannot physically attend on day 3 as I am so exhausted and end up in bed all weekend.

I still cannot engage with emails as I struggle to concentrate for long enough and I have not dared open my work emails. Twitter has been great way of communication, and a saving grace, as it makes you feel that you are part of the real world. You can Tweet from your bed and it takes very little concentration as you can dive in and out very easily from any conversation.

I am beginning to feel normal though and the weekend of Week 12 has been a great goal to look forward to. My sister and I have booked birthday presents for each other and this has ended in a personal shopping expedition, a styling session, a photo shoot and an overnight stay in the Tower Guoman in Central London. We travel into town and book in. We have a fantastic room overlooking Tower Bridge and there are crowds of people in town. We travel into Oxford Street and start the session with the personal shoppers. One takes her time and understands her client and guides her to exactly the right styles for her body shape. The other, does not get to know her client well and pulls clothes that are completely inappropriate and makes the client feel quite deflated. This reminds me of our current trainees, if you take time to get to know them and what they need, they tend to do well and flourish in a firm. If there is no educational engagement then the trainee gets along but does not feel invested in and just about survives in the current environment.

We go out for a Chinese in the evening and I look around at people walking past. We have no idea how people are managing in their lives, whether they are sad or happy, well or not, financially secure or just coping. We all wear our own facades and get on with our busy lives. Perhaps we should all take a moment or two to really look around and smile or do a good deed but not let anyone know.

The following afternoon we enjoy our photo shoot. I look at the photos which show the aftermath of illness which cannot be hidden by make up. I think back again to my companions on the acoustic neuroma journey.  Everyone has their own story and determination to back to as near normal as possible. The sharing of stories has always been a way of helping each other. Knowing what has been achieved by others gives us the hope that we can achieve this too. I look forward to the improvements and updates shared on social media and thank everyone for their honesty.