Apres radiotherapy

Jo Lawrance cartoon

In a previous blog I looked at my experiences of radiotherapy, what happened, side effects and the measures I took to support myself (i). In this blog I look at the couple of weeks since finishing the treatment, how I’m doing and how I am supporting this phase.

Side effects

Radiotherapy machine; Rowan

Well in my "Finishing your radiotherapy treatment’ leaflet it states that "as a rule you can expect side effects to worsen over the week or two following treatment. They will then start to settle down. Fatigue can sometimes take longer…” Do see my comments re side effects previously (i) - it was a rather gruelling last week of treatment and the week after, things did get worse, especially the rectal and bladder inflammation. 

Ultrasound of bladder

I am writing now just over two weeks since finishing and I am delighted that the last week has been almost back to normal regarding the rectum. The bladder, however, is still struggling and I’m woken more than six times every night - and daytimes I often urgently need to go. The flow and intermittence is also poor but the discomfort/pain has lessened considerably. Fatigue is there but hard to assess what is the hormones and what is the radiotherapy. I am due to restart work tomorrow so I will get a better idea about how I am managing.

Card; gift to those having radiotherapy

In terms of the bladder, the Radiotherapy Department do issue a  guidance paper on how to retrain to hold the bladder for longer. This is about delaying the urge to go to the loo or setting toilet times. I find this hard as often want to go just in case….if woken by a hot flush it is hard not to think it is better to go to the loo then than be woken again in a few minutes. Similarly, if making a journey, I need to think about going before we start even if I don’t need to go to the loo. Anyway, I was hoping this overactive bladder effect would lessen but now think I will need to follow advice of Macmillan website where they suggest keeping a record and do the retraining (ii). This all needs taking seriously as the symptoms can last months, years or permanently. 

A friend lent me some of the Men’s Stay Dry pads; at one point was thinking I would need them but have managed to avoid so far. However I have them in the cupboard in case things change again.

Diet can also help; probably reducing my coffee intake might help but I can't take away that pleasure at the moment (iii).

My tip to others here is to reread the info given when you have any side effects or go to a site like prostate cancer or Macmillan (iv). I think I was believing so totally that I would get better in days I did not relook at the leaflets re side effects until the last couple of days - even reading them first time I was thinking I am not getting any of these, why am I reading this!

Post radiotherapy protocol

Well from my reading and talking with a Naturopath and others, a number of possible suggestions were made about how to support this first six weeks after radiotherapy. Again I note this may well be different for each of us as we will experience the radiotherapy differently; do also check everything you take to see how it might interact with medication or other supplements. I have already written about the supplements I am taking (i) and (v) but here is an updated list since ending radiotherapy:

I finished my last bottle of this for a while

Supplements continued

Probiotic x1 (where poss taken with raw veg)
Vitamin D 5,000IUs
Turmeric x2 tablets plus some in food
Selenium x1
Milk Thistle 15drops  x3

Magnesium Citrate
Lecithin

Changes to protocol

Biostrath and Immiflex - I stopped these when I finished them just after the end of radiotherapy

Berberine - a friend said his functional doctor recommended ten days 4x 500mg of Berberine to help with bleeding after radiotherapy - I've taken this before and so I’m just completing two weeks of this. There is some research about this and radiotherapy (vi).

Homeopathy - listed previously - I stopped in last couple of days

D- Mannose I also stopped in last couple of days, but see below re more bladder support. 

New supplements

Solidago Complex - there is some research showing that this herb has a potent antiproliferative effect against human breast, kidney and prostate tumor cell lines (vii). However I am taking it to support my bladder. The Vogel's Solidago Complex Drops (sometimes known as ‘waterfall drops’) are a combination of four herbs which work to strengthen kidney function, detoxify and prevent recurrent bladder infections; Solidago (Golden Rod), Birch, Horsetail and Restharrow. Solidago is basically a kidney tonic helping to combat infection of the urinary tract and remove toxins from the kidneys via the urinary tract. 15 drops x3 per day. I am also told that it works well with Milk Thistle.

UltraInflamX - this is an expensive 14 day course of easily digested powdered mix that provides nutritional support for individuals. The herbal extracts include turmeric, ginger, green tea and boswellia plus bioflavonoids and a full spectrum of nutrients. I was planning to start this two days after radiotherapy finished as I didn’t want to interfere with the treatment, however in the end it was a week before I started. Amazingly the next day after taking this, coincidence or not, I felt a shift in the inflammation symptoms and they got noticeably better. I suspect this supplement played a role in that. 

Making up the UltraInflamX

Uva Ursi - 15drops x3 per day - this is primarily for urinary tract disorders and inflammation. Having stopped the D-Mannase I still wanted to support the bladder (although I have read that you can take both together). The Uva Ursi contains echinacea (viii) which has a role in improving white blood cell counts after radiotherapy. I will also consider taking some extra echinacea depending on how this latest protocol works for me. Certainly in the past I have found echinacea to be very supportive to fighting off infections and building my immune system; this could be just what is needed with the threats of coronavirus adding to the mix.

Chlorella - I had meant to start this powder sooner but my order got held up so only arrived a couple of days ago. Chlorella is a fresh water, single-celled algae that grows in fresh water - it was first around some 2 billion years ago when it was the first form of a plant with a well-defined nucleus. It contains the highest amount of chlorophyll of any known plant and is thought to boost the immune system and help fight infection. It is now used by some as an adjunct supplement during radiation treatment for cancer; it works by removing radioactive particles from the body after radiation treatment (ix). The suggestion is to take for two months and be aware that it can increase iodine levels - this can be good for some and a real problem for others.

Spirulina - while waiting for chlorella to arrive, I had some spirulina in the house and took that instead. Spirulina is a spiral-shaped, multi-celled plant with no true nucleus; it’s blue-green in colour and can grow up to 100 times the size of chlorella. I read that apparently during the Chernobyl disaster, a dose of 5 grams of spirulina for 45 days was used successfully in fighting radiation poisoning (x)! Many articles repeat the suggestion that it could be useful but I have found only a scattering of research to confirm. The good news is that it looks like it will do me good and does have very few side effects. Also like Chlorella it is anti inflammatory and boosts nutritional intake, but it is the chlorella that has the reputation for detoxification (xi).

Other actions and possibilities - rebuilding the gut

Finishing these powders to help rebuild gut

Rebuilding the gut is key in all this as it is ’responsible’ for our immune systems. To this end I have also looked at Intestinu, Immiflex, astragalus, beta-glucans and grape seed extract; but the above is enough to be going on with at the moment. It is also important to note that research shows that people who eat the highest natural fibre diets have the best immune systems. Clearly the probiotic I’m taking is crucial but also the sauerkraut plus very occasional raw unpasteurised cheese and Kefir.

Lastly I am continuing with regular exercise, meditation/visualisation, three saunas a week, shiatsu and healing every three or four weeks and started with my first rectal ozone yesterday since stopping due to the inflammation. I am also continuing with my nutrition protocol, although this slipped very slightly in recent couple of weeks as a sort to celebrate the end of the radiotherapy. I am still on the flaxseeds (taken ground and taken soaked in water), green tea drinks, turmeric, garlic and the ‘Rainbow diet'. 

Celebrating end of Radiotherapy with a serious smoothie!

I am feeling that I will probably also look to do some sort of extra detox soon, but for the moment I am working to rebuild my immune system ahead of seeng my oncologist early April. Although I’m guessing that might change with the coronavirus as already our surgery is only doing telephone appointments.

Notes

(i) https://myunexpectedguide.blogspot.com/2020/03/radiotherapy-how-was-it-for-me.html

(ii) https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/radiotherapy/pelvic-radiotherapy/overactive-bladder-after-pelvic-radiotherapy
(iii) https://myunexpectedguide.blogspot.com/2019/07/coffee-good-or-bad-for-prostate-cancer.html

(iv) https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/radiotherapy/pelvic-radiotherapy/pelvic-radiotherapy-late-effects
(v) https://myunexpectedguide.blogspot.com/2019/11/increasing-effectiveness-of.html 
(vi) https://www.ncbi.nlm.nih.gov/pubmed/19757213 
(vii) https://www.sciencedirect.com/science/article/pii/S0102695X18302679 
(viii) https://myunexpectedguide.blogspot.com/2019/01/current-supplement-protocol-for.html and https://www.readersdigest.ca/health/conditions/cancer-treatment-natural-supplements/
(ix) https://www.herbwisdom.com/herb-chlorella.html and

https://onlinelibrary.wiley.com/doi/abs/10.1002/ptr.2650040605
(x) https://articles.mercola.com/sites/articles/archive/2011/11/09/spirulina-reversed-radiation-damage-in-chernobyl-children-in-just-20-days.aspx

(xi) https://www.ncbi.nlm.nih.gov/pubmed/26308762

Fear; part four prostate cancer and coronavirus

From Information is Beautiful

The Coronavirus has already saturated the news but I wanted to look very briefly at what the medical staff are saying about prostate cancer and a wee look again at fear. Like many, I still haven't got my head around all this, so these are some rather random initial thoughts...

I have seen that those of us with cancer face an increased risk regarding the virus on top of the risks associated with age (i). Cancer Research UK advises anyone receiving treatment for cancer that 'It’s especially important that you follow NHS advice’ (ii). 

Having just come out of radiotherapy I was slightly heartened to see that the radiotherapy, while impacting on the immune system, does not put me in the highest risk groups with cancer; those with prostate cancer, who need to look out more, are: 

 • men having chemotherapy, or who’ve had chemotherapy in the last three months

 • men having clinical trial drugs that affect the immune system, such as olaparib (Lynparza®) or pembrolizumab (Keytruda®).

You can see more on the Prostate Cancer UK website here with info about how to support ourselves (iii). See also here the general statement from One Cancer Voice (representing 19 cancer charities). 

Update 17.03.20: Public Health England issued advice that lists conditions with an increased risk of severe illness from coronavirus and then also there are some clinical conditions which put people at even higher risk of severe illness. That list includes people with cancer who are undergoing active chemotherapy or radiotherapy. Fortunately I have just finished but I am aware that the immune system can take some weeks to rebuild - see here (viii). Taking hormones (as I do) is also an issue. Dr Crawford at Prostatepedia (ix) notes that "some people that are on hormone therapy do have some risk factors that evolve from the hormone therapy, including increased risk of cardiovascular events. So, I think, yes, they need to be more careful."

Secretary of State for Health and Social Care Matt Hancock, said yesterday (x): "In a few days’ time – by this coming weekend – we will need to go even further to ensure that those with the most serious health conditions are largely shielded from social contact for around 12 weeks.” Plus useful perspective here (xi) from someone who has a chronic illness. Thoughts with all whatever your situation.

The Coronavirus is certainly testing us all around fear. Fear is one of the viruses key symptoms and as I’ve covered in previous blogs, fear is a killer in itself (iv). We know fear weakens the immune system and thereby makes us all more susceptible to illness. The levels of fear being induced are to such a level that they are feeding mass panic. 

It was therefore good to read an article by Paul Levy, who describes himself as a wounded healer. He gives a refreshing take on how we can see this pandemic. He writes;

 “...the coronavirus is the medicine that can help us get over ourselves and realize that the most vital and urgent task for humanity is to see through what Einstein famously calls an 'optical delusion of consciousness' - the illusion of the separate self… 

When fear is collectively mobilized, due to its psychically contagious nature, it takes on a seemingly autonomous and independent life of its own, feeding mass panic that easily turns into a collective psychosis. To see through the illusion of the separate self is at the same time to take away the power that fear has over us (as well as to empower ourselves), for the experience of separation and fear (of “the other”) mutually co-arise, reciprocally reinforcing each other. Genuine compassion (which strengthens the immune system) is the result of this realization." (v).  

Kelly Gores, from the HEAL Documentary, quotes Dr. Wayne Dyer,  who said: “When we change the way we look at things, the things we look at change.” She then goes onto say: "While many of us are in an anxious cycle of fear, please remember we can shift our focus and our thoughts to gratitude right now. We can close our eyes, connect to our breath, turn within and sit in silence until we drop into our parasympathetic nervous system. That is how we create peace of mind, we flood our body with healing chemistry, and we give our immune systems a nitro boost. Let’s shift our focus from the helplessness of the unknown to the confidence of what we DO know and CAN do. Let’s break the cycle of panic, accept what IS, and change the way we look at things. This might require taking a break from all the negative, fear-driven news and shifting our attention to positive and inspiring content".

Another great article comes from Maff Potts of the Association of Camerados (vi), he concludes; "Let’s see this for what it is: a big, frightening, very serious H.G. Wells kind of a story that teaches us something by revealing how we relate to each other, how we need human contact and connection and maybe when this is all over maybe we’ll know that we have to “look out for each other” and not just because Boris Johnson told us to!"

Brother Richard

This wonderful poem below that is being circulated widely on social media is by Capuchin Franciscan priest-friar Richard Hendrick in Ireland (vii). Brother Richard captures something of the same essence that Paul Levy does; perhaps this virus will really help us all come together as one. Certainly there are beautiful signs of neighbours coming together locally...


Lockdown (March 13th 2020)

Yes there is fear.
Yes there is isolation.
Yes there is panic buying.
Yes there is sickness.
Yes there is even death.
But,
They say that in Wuhan after so many years of noise
You can hear the birds again.
They say that after just a few weeks of quiet
The sky is no longer thick with fumes
But blue and grey and clear.
They say that in the streets of Assisi
People are singing to each other 
across the empty squares, 
keeping their windows open 
so that those who are alone 
may hear the sounds of family around them.
They say that a hotel in the West of Ireland
Is offering free meals and delivery to the housebound.
Today a young woman I know 
is busy spreading fliers with her number 
through the neighbourhood
So that the elders may have someone to call on.
Today Churches, Synagogues, Mosques and Temples 
are preparing to welcome 
and shelter the homeless, the sick, the weary
All over the world people are slowing down and reflecting
All over the world people are looking at their neighbours in a new way
All over the world people are waking up to a new reality
To how big we really are.
To how little control we really have.
To what really matters.
To Love.
So we pray and we remember that
Yes there is fear.
But there does not have to be hate.
Yes there is isolation.
But there does not have to be loneliness.
Yes there is panic buying.
But there does not have to be meanness.
Yes there is sickness.
But there does not have to be disease of the soul
Yes there is even death.
But there can always be a rebirth of love.
Wake to the choices you make as to how to live now.
Today, breathe.
Listen, behind the factory noises of your panic
The birds are singing again
The sky is clearing,
Spring is coming,
And we are always encompassed by Love.
Open the windows of your soul
And though you may not be able 
to touch across the empty square,
Sing. 

Support in Stroud area 

And in terms of connecting with neighbours locally there are many of us in the community coming together to support each other and help people at more risk. You can read more on the new website at: https://neighbournetworks.uk/

And on Facebook: https://www.facebook.com/groups/stroudcorona/

And to finish with another thoughtful poem - this one by Lynn Ungar (March 2020);

Pandemic

What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
Centre down.
And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.
Promise this world your love--
for better or for worse,
in sickness and in health,
so long as we all shall live.

Update 24/03/2020: Latest NHS guidance for management of cancer patients: https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/Specialty-guide_Cancer-and-coronavirus_17-March.pdf

Notes

(i) https://informationisbeautiful.net/visualizations/covid-19-coronavirus-infographic-datapack/
(ii) https://www.cancerresearchuk.org/about-cancer/cancer-in-general/coronavirus-and-cancer
(iii) https://prostatecanceruk.org/prostate-information/coronavirus-covid-19-and-prostate-cancer
(iv) https://myunexpectedguide.blogspot.com/search/label/Fear
(v) https://www.awakeninthedream.com/articles/the-coronavirus-contains-its-own-medicine 
(vi) https://www.camerados.org/when-hugs-are-banned/
(vii) See more in Richard's blog at: http://brorichardblog.blogspot.com/ 
(viii) https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults 
(ix) https://mcusercontent.com/c0d8ce0558462196cd0d62682/files/ab057023-7a02-4518-ad11-f34fa0071942/Prostatepedia_V5N7_March2020.pdf?ct=t(EMAIL_CAMPAIGN_3_19_2020_11_6)&goal=0_bc8795358a-c99d86b711-199204941&mc_cid=c99d86b711&mc_eid=e7e7fa69da
(x) https://www.gov.uk/government/speeches/controlling-the-spread-of-covid-19-health-secretarys-statement-to-parliament 
(xi) https://www.thisthingtheycallrecovery.com/post/how-to-talk-about-coronavirus-a-chronic-perspective