How I coped during treatment - my top tips

Some people ask about what it's like going through treatment and what helps, or what do you wish you had known in advance.  Prompted by that question, I have looked back to the 'update' I wrote at the end of my treatment. I wrote a kind of blog for family and friendly supporters (only), once a week throughout my treatment, except for the last three weeks.  (In three days time I attend the Marsden Hospital for my year 3 MRI and CT scans.) I live in London, UK. This is what I wrote in August 2015, with some very minor editing to improve the sense:

Treatment finished a few days ago, after six weeks and one day! The radiotherapy lasted five and a half weeks and I lasted the course. The miserable effects go on and on, so despite the chemoradiation being behind me, ‘treatment week 7’ seems operative.

It’s the Bank Holiday Weekend. We had hoped to be in Anglesey but it became clear a week ago that I would not be well enough to travel, or comfortable enough to be away from my own bed and own bathroom. It always was ambitious….

The last 10 days of radiotherapy were tough. I was very sore and going every day for more treatments, knowing they would increase the soreness, was difficult. My skin was ulcerating and peeling off making underwear uncomfortable. Fortunately, on both of the last two weeks, two of my friends, Jilly and Alison, each drove me one day and came with me to see the nurse or doctor. It was a lovely distraction to spend time with them, to pour out all my moans and groans about the pain and how to manage my diet, the skincare, the drugs and which complementary therapies to try in order to keep the worst of the symptoms at bay. (Husband) Tim drove me on all the other days, and has been beside me hour in, hour out. I’ve so badly needed support and sympathy and I owe him big time, and all my friends for being there for me!

Getting through it…

  • The nurse suggested I use a huge square pad slathered in gel to protect my groin and thighs. It was a help, but miserable to be trussed up in slime day and night.
  • Baths were a great soothing alternative, but unfortunately very long soaking damaged the fragile skin further.
  • Aloe vera on the less intimate parts seemed to help with healing, though I have become very sensitive to smells and tastes, and found the aloe vera a bit too pungent for constant use.
  • Maybe bee pollen makes a difference – (My friend, Tina gave me loads of time and loving ideas, as well as stewed rhubarb, bee pollen and crushed brown linseed. I feel a bit of a novice when it comes to dietary supplements, but I trust Tina implicitly, and all I have read suggests it makes sense to eat an enriched diet.  What is more, although my immunity is supposedly low, thanks to the chemo, while Tim and Owen have had a cold, I seem to have avoided it somehow!)
  • A cold gel pad or a cold wet flannel held firmly at the front, eases some of the burning pain when urinating, but it is better still to always leave the bathwater in the bath to cool, then sitting in it and peeing into the water, so the urine is diluted immediately. Far less burn.
  • Morphine gel is essential for sanity, but is not prescribed yet by The Marsden Hospital – I’m working on it… (My constant refrain to the medical staff at the Marsden is please prescribe morphine gel. Their reply: sorry, no can do.)
  • Instillagel (local anaesthetic gel) – useful at the back but too stingy to use when first applied at the front.
  • Avoidance of vegetables to control the fiendish painful cramps and wind, especially garlic, onions and leeks (an uncontrolled experiment in my case, but my kind friends did research online an said that these were veges to avoid. I’m happy to rely on the research of others).
  • Giving up wearing underwear. (Thank goodness my treatment has been durign the summer.)
  • Large long cotton dresses and nighties (no waistband).
  • Lactulose to fend off the constipation, which is a killer for ulcerated tissue, and a side effect of morphine and co-codamol.
  • Oral morphine and constant cover of co-codamol and ibruforen – just do it! Night and day.
  • A dosset (dossette) box for the chemo pills so as not to forget to take them. Only forgot once when I was pre-occupied with how much Lactulose to take.
  • A chart for recording time of taking all the other drugs and the wretched bowel movements – or absence of same and need to adjust the drugs.
  • Domperidone to keep the nausea at bay, plus fizzy water and elderflower spritzer.
  • Chicken soup – deliciously savoury and soothing, except for the onions…
  • Staying in bed: Rest, sleep, reading. Rest, sleep, reading. 
  • Feather pillows.
  • Peer support buddies – there’s nothing like talking to other people who have been on the receiving end of chemoradiation therapy for anal cancer. By amazing good fortune, I was introduced to someone in the UK going through the same treatment about 3 weeks ahead of me and we shared all kinds of very personal details by email. We were both very interested in the evidence for treatments and quality of support and information. We knew of each other form our professional work but were not previously acquainted personally. I have also chatted quite a lot to a woman I met at hospital. She is amazing. As a single woman, she has driven herself about an hour each way to her treatment every day, right the way through treatment. This gives a much more positive message on what is possible that I have given of my own experience.  So much more sharing of patients’ experiences is needed!  (NB - I did not find Blog for a Cure until 2018, three years after my treatment.)
  • Friends bringing: lunch, soft pants with no elastic around the leg holes, music, flowers, digestif teas.
  • Scented candles and lavender oil. Lotions and potions.
  • An engaging novel to get lost in (Have just completed book three of Ferrante’s Neapolitan series. I need the fourth but it’s not out till next Friday!).
  • Lovely family: phoning, texting and Skyping; hugging; excusing eruptions (terrible noisy smelly wind), groans and curses; laughing and distracting.

It was a wonderful milestone when the last radiotherapy appointment arrived. Tim and I visited (son) Gavin and Emma and shared a glass of champagne.  (It was pretty much the eve of Emma’s induction, the baby having not put in an appearance spontaneously, and (friend) Roz recommended a long bath and a glass of champagne as a good way to bring on labour.) As my first alcohol in five weeks, it was a good way to start.

Having had a trip to Ashtead (in Surrey; son's home), as well as to The Marsden Hospital, and done a bit of writing, I felt very tired and sore for the next few days. I spent them mainly in bed. In fact resting, reclining, keeping the weight off my perineum, has been the name of the game for what feels like weeks now. I have been advised to take the oral morphine as and when I feel I need it. Great, except that it makes me very sleepy … and constipated.

On a happier note, our gorgeous new granddaughter, Freya Alana, has arrived. She is five days old today (born 22.8.15). Holding her compact little body is such a joy.  Weighing in, 2lb 1oz heavier than Georgia, at 8lb 10oz, she is quite a chubby little cherub. At 28 months, Georgia seems very much the older sister, drawing pictures of Freya, mastering her name, and making sure Freya has her ‘mouse’ to play with. The benefits of being a ‘big girl’, are numerous: fun and games with grandparents, presents from visitors, swimming with daddy and riding on the back of his bike.

(Son) Owen’s job hunt has come to an end, as he’s accepted an offer from a company in Hammersmith, and when his dissertation is handed in next week, he will move out.

I hope I can move on, too, and give some help with the new little grandbaby and her sister. I’m looking forward to getting to Anglesey in Wales in a few weeks’ time and then to Grasmere in the Lake District in November, and to (son) Robin and Leigh’s visit from Australia at Christmas and our trip to Sydney in 2015.

.........................

I hope my reflections will be helpful for some others. I hope they won't be too frightening. I left all the social stuff in at the end in order to demonstrate that although some of the physical challenges were major, life goes on and I was (and continue to be) very much a part of it, as well as for a few weeks living mostly in the bedroom and bathroom when I wasn't en route to hospital, having treatment or travelling home.  The names of drugs will all be different in the US and in other countries. 

Thank you so much BFAC friends for being there for everyone and sharing / enabling sharing of peer to peer information.

My questions:

- Is morphine gel for direct application to ulcerated skin/mucous membrane used in the US?

- What are other people's experiences of mophine gel?

- Is there much evidence that morphine gel is or is not efficacious?

- What are your top tips for keeping moderately comfortable during the last weeks of treatment and the first weeks afterwards?

Best wishes, Mary

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Janice sent you a hug.
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I used a magic potion of coconut oil mixed with essential oils- frankincense, sandalwood, and lavender. Had burns from the 35 radiation treatments, but ZERO pain! Used Aquaphor and antibiotic ointment as well. Kept area DRY & super clean after EVERY pee and poo with a clot diaper. Wore a cloth diaper in my underwear and slept with a fan on my bottom. Keeping the area super dry during the healing prevented parts from adhering to one another. My radiation oncologist was amazed that I had no pain at all from the burns.
Mary, Janice like this comment
Wow! I can't believe it. You should patent your magic potion. Women (and men) need to know this stuff and where / how to obtain soothing unguents.
My massage therapist/reiki/essential oil expert made it for me. She is absolutely amazing!
Mary what a great post. This is such a wealth of great information. Thanks for taking the time to write it down. i know it will help others. ;-)
Mary likes this comment
Thank you Jill. I should have added that t helped me at the time to write about it!
That is a good one too. There is some sense of release for me after I have written about it.
I remember this so well. We were only a couple months apart.
Great info, Mary!
I would say compared to some we did as well as to be expected.
Mary likes this comment
Yes, lots of positives. And a long road...
Thank you for posting this. I'm sure it will be very helpful to someone in the future. I hope you continue to do well!
Thank u for sharing. May I ask if u have any residual side effects from treatments 3 years out?
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Vital Info

Posts

April 16, 2018

London, United Kingdom SW14

January 2, 1959

Cancer Info

Anal Cancer

Squamous cell carcinoma

Stage 1

0.1 - 1.0 cm

Grade 1

No

Empathise, share experiences and practical tips. Share new reliable research knowledge

The Marsden, Sutton, England

August 22, 2015

No

originally: tiny amounts of bleeding, fecal incontinence, passing of clear mucous. Later itching at the site of the tumour.

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