You’ve Survived Cancer

What Next?

Image result for CRUK image survivorCancer generally comes as a big shock.  During treatment, you struggle to get through the hospital production line and stay positive.

Comes the great day when you have your last treatment – now you can plan for the rest of your life? So why do you feel let-down?

Fellow patients talk of feeling abandoned, and you know exactly what they mean.  You worry what if cancer returns; how do you get your life back on track? What you imagined would be a happy time now throws up a whole bunch of problems.

In the UK we may think we have problems after cancer care, but the great US health industry also recognises it hasn’t got it all right. Recently the world-famous Wall Street Journal devoted a large article to problems of survivorship.  When even the giant U.S. healthcare system experiences problems, here is a guide to what happened after my treatment :

The NHS says a ‘Recovery Package’ will be available by 2020, and the Macmillan website has a lovely video about this.  This is Utopia for many;  the NHS has 2 months to roll it out ‘by 2020’.  Faint hope – so we are still on our own.
We are still going to be left to get on with sorting out what we need ourselves.  So this is a round-up of what has been useful for others:
Appointments – when a long-awaited appointment gets cancelled, here are some ideas what to do – https://aftercancers.com/category/getting-an-appointment/
Exercise– NHS tells us exercise is good for cancer recovery, but don’t make it easy to access this. Elderly People Exercising Concept. Some ideas on https://aftercancers.com/new-ideas-for-exercise/
The latest ‘plans’ for GP surgeries gives them greater authority to book physio/exercise/hydro so ask your GP for referrals.
Hot Flushes most doctors who deal with the Menopause have plenty of good ideas – so ask!
Lymphoedema  This video from Johns Hopkins (probably one of the world’s foremost cancer research centres) has some interesting theories – they do stress they are theories  https://www.youtube.com/watch?v=5HSnurnOi8g
And Lymphoedemia Support Network  is incredibly helpful  https://www.lymphoedema.org
Massage  Every European cancer centre I was treated at ALWAYS included daily massage as part of my treatment.  They say massage reduces pain, relieves stress, promotes relaxation and boosts the body’s production of endorphins, (which can help relieve stress), reduce pain levels and swelling, and loosen aching, tense muscles.  Ask at Support Centres or GP Surgeries for recommended local practitioners.
In the Thames Valley I found the following people helpful – you are bound to find similar in your area
Sarah Bellhouse  – Founding member of MLD UK, now provides Manual Lymphatic Drainage – which is very helpful for treating certain types of Lymphoedema.  Based in Dorchester-on-Thames sbellhouse@btinternet.com
Massage Matters  Karen Hadley is a Holistic Therapist trained in Cancer Touch Therapy.  Based Dorchester-on-Thames  www.massagematters.me.uk
Perfect Scents Karon Whenmouth offers Aromatherapy and Holistic Medical  Massages, Foot and Hand Therapy  (I find this excellent for arthritis pain) etc. Based in Long Wittenham  
Neuropathy  – at last the NHS admits this is a side effect of cancer drugs.  Now it is on the radar, but unknown.  So you may find you have to point it out
Osteoporosis  Royal Osteoporosis Society has helpful nurses on their helpline https://theros.org.uk/
Exercise is definitely the key to managing this.  If you are disabled and find ordinary exercise difficult, try hydrotherapy exercise.  More ideas on https://aftercancers.com/category/osteoporosis/
Skin  – my cancer centre told me that bloody skin blisters all over my body three days after starting Tamoxifen were “due to your age”. Don’t believe them ! https://aftercancers.com/your-skin-during-and-after-cancer-treatment/
Support Groups– don’t think of these as ‘charity’;  They are incredibly helpful; Maggies, The Haven, Macmillan, etc.  Google ‘Local Cancer Support’ or try https://www.nhs.uk/service-search/Cancer-information-and-support/LocationSearch/320
Websites – used sensibly, the Internet can be extremely helpful, particularly those operated by US cancer centres.  They highlight long term side effects, and produce short, informative videos on a range of topics. https://aftercancers.com/helpful-websites-for-survivors/

Xtra Side effects  With all the new drugs coming on-stream, doctors are constantly discovering new side effects. Scientists cheerfully tell us side effects can take 10 – 20 years to manifest themselves!  Thanks a bunch!

If some new symptom turns up, don’t be put off.  My first action is to turn to ASCO on American Websites, and see what they say – then follow the trail and think whom I can best get to to handle this new problem.

It takes time

Everyone reacts differently, but as more patients are treated successfully, doctors and researchers are slowly changing to focusing more on helping people navigate the difficult, often lonely years after treatment.  Doctors are discovering many drugs have side effects, and gradually realise something ‘must be done’.

Macmillan now say they estimate 50% of survivors will have long term side effects. So you are not alone.

What the Wall Street Journal says

Survivorship and its problems are so important, impacting seriously on people’s lives, that the eminent business paper, The Wall Street Journal (WSJ) recently made space for a major article on the subject.

“When the treatment ends, the patients’ next journey is just beginning. They are left with new health issues often caused by the treatment itself, such as damage to the heart and other organs, or worsening high blood pressure and diabetes. Studies show many struggle with depression, fatigue and fear the cancer will return. Sexual function and personal relationships may suffer.

Compounding it all, survivors often feel alone and adrift as they face those challenges. According to a new survey of cancer survivors by the nonprofit National Coalition for Cancer Survivorship, few feel very prepared for the transition to post treatment, nor informed about how to manage their health going forward”.

So survivors face the same challenges both sides of the Atlantic.

What’s happening now

Once hospital treatment finishes, patients find they are no longer the centre of their team’s focus.  The team is treating new cases, and the patient’s  GP doesn’t have time nor expertise to deal with the complexities of survivor’s needs.

For cancer survivors in the States, the WSJ says rather than leaving patients to fend for themselves, providers are beginning to take a much more active role in helping patients deal with life after treatment.

They’re looking for new treatments that won’t take the punishing long-term physical toll that today’s regimens take. They’re focusing on how to help younger patients who will have the longest to live. And coming up with plans to figure out exactly what all patients need in the difficult years after treatment, helping providers and patients stick to the strategies.

The good news is ….

Nearly 40% of men and women will develop an invasive cancer in their lifetimes, with men at slightly higher risk. But thanks to medical advances in detection and treatment, numbers of cancer survivors are increasing.

In 2015, the Commission on Cancer, a programme of the American College of Surgeons, began requiring that, as a condition of accreditation, American hospitals provide patients with a survivorship-care plan.  “We continue to learn more about the short- and long-term effects and complications of therapy, and patients’ problems today may be very different in a year or in five years,” their Dr. Shulman says.

What’s happening in UK

In the UK we have Long-term Plans, STPs, promises of Holistic Needs Assessments, etc. etc.  But it all boils down to an enormous fight to get what survivors really need.

Outcomes aren’t improved by offering patients a one-time survivorship-care plan when they end treatment.  Unlike in the States, where Insurance companies will demand that their clients are kept as healthy as possible, after cancer care in the UK can be very hit-and-miss.  Extra funding allocated to cancer services can range from £1.30 per head, up to £5 – depending on where you live.  Sadly there is a scandalous post-code lottery that has been allowed to develop, and if a patient complains the general attitude, from the CCG down, seems to ba a shrug of the shoulders.

Providing specialized care

With 200+ cancers, that means a variety of necessary treatments for patients—and then a variety of follow-up needs for survivors. The WSJ highlights it is crucial for survivors to be monitored by specialists who can assess their individual risk of recurrence and know the after-effects of specific chemotherapy and radiation regimes.

In the States there is a fast-growing model of care at hospitals around the country—matching survivors with caregivers trained to deal with their particular form of cancer. Without such surveillance, “long-term cancer survivors get lost to follow-up and may return years later with a new cancer that went unrecognized,” says Linda Jacobs, a clinical professor of nursing at Penn and founding director of the cancer-survivorship program.

In the UK the Dept.Health sets up plan after plan, yet seems scared of acting on any of its innumerable ‘long term plans’. GPs generally aren’t familiar with what is recommended for follow-up, nor do they necessarily recognize when someone presents with a symptom that would warrant further specific testing.  As we see with constant horror media stories of cancer signs ignored.

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