Category: General information

The Chemo Legacy – lingering effects after 3 years

While rehashing my FLOT leaflet in an earlier post, it got me thinking about medium to long-term side effects so here are a few reflective points at three years post-chemo.

Nervous system

The nerve agents have definitely affected my hands and feet. I can only handle or carry very cold items for a few minutes before my fingertips start to feel uncomfortable. The same happens if my hands get cold so I usually carry a pair of gloves and need two pairs in the depths of winter.  Walking barefoot on very cold floors is uncomfortable and I often wear socks or sandals around the house.

Migraine

I do not know whether it was the chemo or the cocktail of drugs I had during and after surgery but I no longer get migraines. The only time I get headaches now, is if I do not drink enough water and I usually wake up with one.

Hair

I noticed my hair starting to grow back 12 weeks after the last cycle. It grew back thicker, curly, course and grey. My husband said I resembled a fox terrier. I’ve lost count of the number of haircuts I had once it got more established and my hair is as long now as it was when I was diagnosed. My hair is also in pretty good condition and has gone back to its original texture ie no longer curly. I waited 12 months since the last cycle before I started to colour it again. Hair grew back elsewhere too. I noticed my nose ran for months after chemo probably due to hair loss in the nasal cavity. Although a kind of rhinitis persisted for months, I can not remember when this stopped being a problem.

Hormones

My ovaries put up a fight at the time but chemotherapy definitely signalled the start of menopause for me. Whether it would have happened anyway, who knows?

Hygiene behaviour

I was careful about touching surfaces when out and kept my nose and mouth covered with a scarf all through treatment. This has been great training for dealing with the coronavirus pandemic as I easily slipped back into these prelearned behaviours. The sterile gloves I bought at the time have also come in very useful.

Top tips prior to starting FLOT or other types of chemotherapy

Here are a number of tips to consider if you are about to start chemotherapy.

  1. Buy a digital thermometer as you will need this to monitor your temperature twice a day.
  2. Ask your GP for a full blood count, liver and kidney function and nutritional status re B12, iron, magnesium before starting treatment. Ask for a print out so you can use this to monitor any changes or deterioration. Request another set, once treatment is complete so you can address any deficiencies.
  3. Get as fit as you can prior to starting treatment. Staying active definitely helps to counteract side effects. If you have lost weight prior to diagnosis – try to gain a few pounds. This is incredibly hard but will help if you have a few days when you don’t fancy eating much. Complan or Meritene shakes (available online or from Boots) are good supplies to have in to boost your calories, vitamins and minerals.
  4. If you have any issues with constipation, ensure you get your bowels moving prior to treatment and drink plenty of water. OTC laxatives, prune or beetroot juice, dried mango, Vaseline and Anusol suppositories and Imodium in case of diarrhoea are all useful purchases.
  5. Hair is likely to fall out or thin so it is a good idea to acquire either a few chemo hats or a wig. You can get a free wig if you speak to Macmillan at your cancer centre.
  6. Buy either some latex free or sterile gloves – you will never know when these might come in.
  7. Warm gloves – you will need these to protect your hands.
  8. Google fasting and chemo in relation to reducing side effects. I tried fasting on cycle 1 and 2 but by cycle 3 I couldn’t be faffed and just ate what I felt like. I personally did not notice a massive difference but other people have reported benefits.
  9. Make sure you take 1-2 litres of water to the hospital and drink most of it. Apart from keeping your kidneys active to flush out the meds, it can be really hot on the chemo-suites and it is important to stay hydrated.
  10. Always have a bag packed with essential items, eg nightwear, underwear, towel and toiletries when undergoing treatment as you never know when you may need to be admitted for a raised temperature and it saves your loved ones the aggravation of packing for you.
  11. FLOT takes a minimum of 4 hours to infuse and with blood tests on top, you could be in the hospital 6 hours or more (my record was 9 hours). Make sure you have something to eat or something to do to pass the time. I took a book, an art pad, my journal and my phone with plenty of music and programmes downloaded. There was Wi-Fi in the chemo suite so remember to ask for the code as it probably changes each visit.
  12. I was told to live as much of a normal life as possible while receiving treatment. I did try to do this and went to all but two live concerts booked prior to diagnosis. When out in busy places I tended to cover my mouth with a scarf and put Vaseline on my nose and mouth in an attempt to trap any bugs. I don’t know if this works but anything is worth a try.

Another lockdown update

It has been nearly 6 months since the start of lockdown. I thought I would update again as there are a few things that have changed or are going to and reflux has raised its ugly head again.

Exercise

I am trying to get fitter. Grabbing a week in the Lakes in July made a huge difference mentally and physically as we had a change of scene and managed lots of hillwalking so my fitness is not too bad.

I am considering doing sprint interval training (SIT) equating to 7 minutes a day. My rationale being the shorter the time need to bounce my remaining stomach around and still gain benefits from cardio etc, can only be a good thing.

Eating

I am pretty much down to 3 meals a day with a couple of smaller snacks and have halved the portion of Ready Brek for breakfast. My lowest weight post-op was 2 kg below my normal weight and this was OK so I’m happy for my weight to stay 1kg below. I can gain weight now so everything is cool.

Breakfast is 15g of Ready Brek, mainly for the additional vitamins and minerals it offers along with a good handful of berries and a good sprinkle of flaked almonds, pumpkin and sunflower seeds and the off spoonful of yoghurt or kefir.

My supper portion is being reduced with a view to ditching it altogether. Going to bed with an empty stomach did not work well at first but I feel I can do without the extra calories now and maybe my stomach has stretched so it sits lower even when empty.

Sleeping

Since lockdown, my sleep has been really good – napping is rare and the fact there is no urgency to be anywhere in the morning and no commute, means I can sleep in til 8. In fact I have returned to my younger, night owl rhythm of going to bed late and waking around 8 or 8.30. I wonder if anyone is doing any research on circadian rhythms during lockdown…..

Reflux and oesophageal sensitivity

The burning sensation of reflux has increased recently – it does from time to time and I am eating Gavsicon advance like sweets. Since my op, my oesophagus has felt sensitive but given the omeprazole I take, this may be an element of nerve damage/sensitivity triggered by secretions or food rather than it being actual acid.

Troublesome foods

Certain foods and textures definitely cause me problems, ie I can feel them or they make me cough so I try to avoid as much as possible. I loved the story of the Princess and the Pea when I was young and now feel like the oesophageal equivalent as I can detect the smallest amount of chilli, ginger, pepper or similar ‘hot’ spice in any food.

Things like breaded, crunchy and lumpy food can also cause me to cough. Very tough, well done meat or dry meat never held no pleasure in the culinary stakes but now they are impossible to get down. Stringy, tough and very sinewy meat is also one to avoid.

Things that my stomach does not like

Below is a list of things that cause problems due to displaced gastric contents, whether this is in fact acid per se, who knows but it feels unpleasant:-

  • Lying flat – prone or supine either stationary or during exercise
  • Lying on the left side even propped up, although can get away with it if sitting up and leaning on a cushion/pillow
  • Lying on the right side with knees drawn up
  • Sitting with legs drawn up
  • Going out for long walks can sometimes cause problems so I try to remember to take food or gaviscon with me
  • Bending over or squatting down even when I have not recently eaten
  • Types of food listed above
  • Tight clothing around the middle and although I have not succumbed to elasticated waist trousers, I only wear a belt if I really have to.

Finishing on the positives

Here is a list of things I can do but couldn’t a few months ago

  • Eat less frequently but with larger portions – NB these are still very much reduced
  • Sleep more on my right side than I could but with a decent sized, solid pillow for support
  • Walk further, BP and resting heart rate are nice and low
  • SIT maybe the best exercise for oesophagectomy patients
  • Dumping syndrome is relatively rare now – maybe once a month or less.

I am planning to get some more bloods done soon to see if everything is tickety-boo and will use thriva.co for this as mithering my GP is also something I want to avoid at the moment.