What do you wish you had known before starting chemotherapy?

I remember being told unexpectedly that I needed chemo and the only thing I really knew about it was how it is portrayed in films/books etc. I didn't know about the different chemotherapy drugs or the different regimes. 

I didn't realise how long I would be in the hospital. I would go in at around 8 and be one of the last to leave at around 530/6. 

For me I felt better once I realised it was one day in hospital and then the next 20 days at home. 

It is normal to feel scared and chemo can affect us all differently. 

For me there were side effects and some were pretty unpleasant at the time, but they did tend to pass and there was often medication available. 

I was given a book to write in and it helped to write each day how I was feeling and about any side effects. This helped when I had an oncology review each cycle but also because I noticed a pattern with each cycle. For instance I felt most unwell for the first week and then would improve by the second week. On subsequent cycles I still felt unwell but knew it would soon pass. 

They normally give you a 24 hour cancer helpline and I would say never worry about calling it- the nurses on mine were really supportive. 

Hair loss for me and many others can be a big concern. Ask about scalp cooling and whether it may be suitable for you. It can not be used for all cancers but for mine it could be and it gave back some control. 

I was given steroids to take for the first few days of each cycle and I found having a tapering dose helped avoid the sudden crash on day 3 when they would drop. 

With anti nausea medicine it works best if you take it at the first sign on nausea- before it really takes hold. And if one type does not work- then there are others that can be tried. Small meals and snacks worked best for me. Ginger biscuits and barley sugar sweets helped me. 

Fatigue is real and it is important to rest up and go with the flow for at least the first week. Listen to your body.

The effects for me accumulated with each cycle and this can be normal. 

They have to tell you all the potential side effects when they are consenting you for the treatment. It does not mean you will necessarily get them all. If you do have any, tell them and they can often give advice. 

Things can taste different when you are on chemo. Some foods that you normally like can taste off. I found lemon tasting things most palatable. 

During chemo if you notice any tingling, pins and needles in your fingers or toes- it can be a sign of neuropathy developing and it may mean a reduction in dose is needed. 

And lastly- buy an accurate thermometer and keep an eye on what your normal temperature is. Any deviation up or down, call your hospital and be aware of any symptoms of sepsis. If you become neutropenic as I did several times - any infection could take hold quickly. I called mine, went straight in and was given IV antibiotics and full checks. 

Jane

Thanks for this, how did you manage your energy levels? After my second round 2 have really crashed, needing sleep and unable to exercise.

I spent a lot of time resting. Tried to keep up with fluids. Ate little and often. 

I think, listen to your body and keep your diary up to date with how you are feeling. Then you have all the info when your have your next review. Remember that you have a 24 hour number to call for your hospital if you are struggling or worried about anything. 

Chemo was pretty easy and only 5 five treatments. It's radiation that I didn't like. 38 weeks then burns on my neck which are finally going away after several months. The only thing that made treatmen tolerable was trying to stay active. I have always walked 3 to 6 miles a day. Try to remain active before and after.

I really wanted to come on here and say that chemo is not always as horrific as portrayed.

I appreciate I was very lucky but I did not lose my hair, it was a little delicate so I used a strengthening shampoo and conditioner and took biotin.

I had no problem with sickness or lost of appetite and actually put on weight due to eating exactly what II wanted. 

I did have problems touching or drinking cold things. Gloves and slippers solved this. I also purchased a thermal teapot so hot drinks were always available.

I also had a chart with what drugs to take and when, it also acted as a countdown to the end of treatment. 

The effects of chemo vary so much it is impossible to predict but do try and be good to yourself.

Oh, Gosh, I wish I had read this forum before receiving chemo.

The shock of that word 'cancer' floored me and left me in a state of not really being able to make an informed decision on the chemo options or to ask for what else was available.

I was informed on Thursday that I had bowel cancer, and that I would be operated on Monday the following week ( 4 days) for a routine, easy to get to 'growth' in the centre of my bowel. And unless there were any complications with the histopathology of the growth they remove, I would be fine unless they found something, and then I might need some chemo to 'mop' things up. 

The operation came and went, and all was well until the results showed that the routine removal of lymph nodes ( 14 nearest) had shown that four were infected, and that I would need chemo. And that chemo would need to begin within two weeks due to higher success rates, and that I had a choice between Capox and Folfox (Folfox has a 5% higher recovery rate)

I chose Folfox, which meant a 5-hour drip in the chemo unit ( UCLH London, fantastic staff and hospital) and then being on an IV drip with my chemo bottle for the next 43 hours ( 48 hours in total) fortnightly for 13 weekends.

August to March 2023/24.

The choice was tough, but I made the right decision.

My friend came with me on Fridays and sat with me for 4 of those hours. We laughed a lot, bantered with the nurses and drank tea and ate biscuits. But then I had to go home with this bottle strapped to me. Sleep was tough; lying flat was uncomfortable, but positioning the pillows soon worked. i adjusted my home and added support handles to get in and out of the bath.

I had a girlfriend who was fraught with anxiety, but really supportive, but I couldn't manage 'our' feelings or that I would be a burden on 'our' weekends ( she was a divorcee, and chemo was on her childfree weekends. There was no fun and no sex, and this was a new relationship of 6 months, so I let her go as I didn't think it was fair to her and that my mortality was in question. 

Relationships felt important —my friends, my kids, and support were needed —but feeling guilty was draining.

I began taking a host of supplements, all cleared by the pharmacy, to support my immune system. Mushroom powders and vitamins, etc., and advised to stop turmeric and a couple of other herbs due to the energy my body would use to convert them in the endocrine system, liver, and kidneys.

I stopped eating red meat, drinking alcohol and increased full-fat milk (good for colon cancer). Stopped all UPFoods and sugars, and ate wholemeal bread, fruit loaves, bananas, and porridge were my saviours. I bought only organic and still do, and I appreciate how incredibly expensive this all is. I purify the water and air in my home.

I researched scientific and medical/oncology like mad on the Science X app because I wanted to live so much, and still do. Its incredible the amount of clinical breakthroughs and trials that are currently being undertaken and i researched because i needed hope. I was also lucky enough to live near the University College Hospital London, one of the leading cancer research hospitals in the world.

I placed food charts and pictures of my kids everywhere, and I prepared for winter, the bleakest winter imaginable.

I bought ski socks and thermals and went to the hospital wrapped in 5 layers for the chemo bottle and the removal on the Sunday, but also having full bloods two days earlier and the consultations. It was a process I willingly prepared for, and acceptance was key.

I lived in one room during chemo weeks with the heating on an oil radiator. I was cosy but always cold, always.

This may shock some of you, but I am qualified as a psychosexual therapist and to say that s-x is really good for our immune system. A daily practice keeps energy levels high, boosts vitality, and enhances the feel-good factor...but only if you have the energy...think s-x, be s-x, breathe it.

In the weeks I didn't have chemo, I would go to the gym three times and use resistance bands indoors during chemo weeks, as exercise is proven to improve outcomes for cancer patients by up to 50%, across all cancers, not just colon.

At the UCLH, they have a Macmillan Centre with a welcome cafe, drop-in facilities, and online courses. I attended in person in the kitchenette area and spoke with other patients. I needed others who knew what I was going through and how scared I was. The McMillan staff were exceptional with understanding and empathy, as were our amazing NHS nurses, doctors, blood takers, and receptionists/ support and clerical staff. Every one of them was worth their weight in gold.

. I also attended online Zoom calls regarding fatigue, diet, exercise, weight loss and fear. McMillen's support and offerings have contributed to my ability to cope with what was a nightmare, which eventually just became another journey — one I had to win.

Folfox chemo was reduced to 50% after the 1st bout...I was on the toilet 40x the first night, nausea was everywhere, and weight loss was dramatic, 8 kgs in 3 weeks. The hospital cancer hotline on call was equally supportive. meds for nausea, meds for sleep, meds for post-chemo settling and others. But i stopped all meds after chemo week 2.

And then a common cold and hospitalisation within 1 hour. I visited Waitrose for some organic food shopping. I had ordered online but had a disagreement with the Sainsbury's driver, who told me to walk down the three flights of stairs and collect my shopping as he wouldn't bring it up even though he knew i was on chemo...so I had no food and was too proud to ask my kids to get the shopping with their busy lives and my hassles.

A cold November night, masked up, and five layers on, sweating there and back. I removed the mask to talk with the security guard, and on the way home ( about a mile walk), I felt my sore throat, raspy breathing, and 20 minutes later, a temperature, hotline to oncology, ambulance sent, walked through the A&E into isolation and placed on an IV drip. A lovely nurse called 'Joy' took my temperature and told me that if it were one more degree higher, I would have died, from a common cold!!! I was discharged within 24 hours after the whole of my oncology team came to visit and my consultant gave me the all clear to go home.

Bout 10 of chemo and my fingers and toes began to tingle, and then I began falling over and dropping plates and cups...my brain couldn't make sense of anything, and everything was hazy, especially my thoughts. Eventually, they cleared, and I googled CIPN, chemo-induced peripheral neuropathy...and my world caved in.

In my work as a mental health professional with extensive clinical knowledge gained through research studies, I know that fear is five times more powerful than any of the five main feelings. And when we are in fear, we humans will seek out and read information that contributes to more fearful thoughts and then our nervous system ( parasympathetic, sympathetic, central, limbic and polyvagel) will seek fight, flight, fawn or freeze...and I went into panic by reading about arms and legs that became unworkable, and digits and toes becoming useless due to CIPN poisoning.

I informed the hospital that I wouldn't have any more chemo and that I wanted the MRI and other scans and bloods brought forward,we would see if the last three chemos would make any difference, as my thinking was if the cancer hadn't been killed with the first 10, the last three wouldn't make a lot of difference and that I quite enjoyed my arms and legs and other bits.

They moved the scans and dates forward, but I agreed to have one more chemo, but without the platinum-based oxiplatin stripped out( which burns the nerve endings that cause CIPN).

During the previous weeks, I had also had scans for testicular cancer and liver and kidneys due to some unusual bloods, all were clear, thanks to God and the NHS.

My final MRI, other scans, and most recent colonoscopy have all come back clear. I shall have a follow-up blood test in January and a colonoscopy in two years.  The CIPN is lessening; I do exercises and use a mat that sends electric shocks through my feet and legs. It seems to help, but I am nearly fully recovered.

Two weeks ago, I spent a weekend in Bucharest with my two daughters at a spa. Their grandad died of various cancers 4 weeks ago and their stepfather is having immunotherapy for liver cancer, we all needed a break.

I play board games with my son and poker, watch footy matches, and go to the gym. I drink a little too much alcohol, but I stick to everything else—no red meats, UPFs, water, purifying the air (when possible)  and organic food.

The reason I have gone into such detail is that I found many lists of 'do this or that', but never really understood why people did these things.

I also visited the church regularly, on my own, they are so peaceful and a great place to cry...our bodies' natural way to destress and of course sex and laughter ( but not in the church, ) I needed God. I believe I have a better understanding and connection than I did before this wave of shock that cancer and chemo brought, and the residual fear is still around.

So here's my survival list:

Always talk through your concerns with your oncology team and clerical staff. Speak with McMillen if you need an advocate; they know what they are doing.

Use a food delivery firm and ask for help from friends and family with shopping and Money. The state and benefits system is there for us, and McMillen helped many of my friends (patients) with travel and living costs, giving them great advice.

Buy clothing and prepare for the cold and misery; it will happen. Heating saves; the cold kills the mind and senses and our morale.

Use the meds if needed. I stopped all meds after bout two as I found they weren't as supportive, so monitor your body and do what works for you.

Exercise the best you can; apps help. Seated yoga and meditation, sex and erotica, resistance bands and household chores, chess and Duolingo for the mind, and be as social as you can through Zoom and mask up indoors with visitors.

Be prudent with your energy and allow yourself to sleep, sleep, and sleep; healing comes with rest.

Watch TV funnies; for me, it was Dad's Army and the rest of that genre, like Carry On films, The Goodies, or whatever funnies you like. They make us feel better.

Diet and nutrition: A famous doctor, Dr Shintani, Harvard Medical School, said: Eat junk and you get a junk body. Your immune system needs a good diet to cope with cancer and chemotherapy. Check out supplements and clear all of them with your pharmacist.

Use the NHS and Macmillan, the church and your own support network. And remember that you are not and never will be alone; it's all in the mind, but it's also your choice to seek quiet time.

If you can reach out, you are reaching up and grabbing life. If you don't, then remember this: two men looked out of prison bars, one saw mud and one saw stars.

Make your bucket list.

FYI, although I'm not a great poker player, I donate 10% of any winnings to McMillen and the UCLH cancer charity because I need to feel like I am giving something back. I hope to be known as the 10% man, and I have worn and will continue to wear a cancer charity t-shirt if I ever get good enough to be on the final table during televised and media events.

We can beat this together, but it costs money, a lot of money.

If you are on the precipice, looking into and consumed by fear of this cancer journey, and whatever chemo regimen you are about to undertake, I hope and will always hope for your success and the eradication of these terrifying diseases that we call Cancer.

I am glad everything is working. However I chose to go through the chemo, radiation and surgery alone. Even walking the mile to the hospital so worn out I could barely make it. That gave me more determination to fight it.

My experience with Chemo is unfortunately over several different types and regimes over a period of about 4 years.

What I can say is that not all Chemo Treatments are the same, both in terms of how they are administered and in their side effects. So one piece of advice I can give is don't necessarily base your worries or concerns about going into a new treatment on others experiences. It's very likely your experience will be different. There is also continuous improvement and advances in cancer treatments and medication meaning things are getting better all the time.

I have personally seen this in the nearly 5 years since my diagnosis where a brand new drug has been given approval that pretty much immediately put my Myeloma into remission and has minimal side effects (for me).

I would like to give some practical advice however on a few things that I have found have helped me over the years.

1. In order to stay warm invest in some thermal underwear
2. In order to stay warm when going outside I also bought some cheap "snow boarding" trousers. They are fur lined and keep my legs nice and toasty during winter weather.
3. Another keeping warm tip - I walk the dog every day and found no matter what gloves I wore during winter months my hands got extremely cold. So I bought myself some heated gloves with rechargeable batteries and 3 different heat settings. These have transformed my walks and I come home with my hands still lovely and warm.
4. I also found that due to my substantial weight loss (I lost 30%) I couldn't sit on hard chairs for any length of time so I bought a honeycomb cushion that rolls up and fits in my rucksack that I take with me pretty much everywhere.
5. We are told during treatment to keep our liquid intake up but I found in hospital and elsewhere that provided water was unpalatable to me  as it was "luke warm" (I found that I was particularly sensitive to this during Chemo). I therefore always carried with me a thermos flask with iced water in it.
6. Another thing that I found essential during my treatment is to get out in the "fresh air" even if it's just for a few minutes. It always made me laugh that many days it took me far longer to get dressed and undressed to go outside, than I actually spent in the fresh air but every time I did go outside I felt better afterwards so the effort is worth it.
   Despite me having a spine that has been majorly damaged by the Myeloma in the early days before diagnosis and so I'm only able to walk relatively short distances before the pain in my spine gets too much; walking in the fresh air and countryside is what keeps me sane and lifts my spirits every day I do it. Even if I couldn't walk I'd look to using a wheelchair to do it I personally think it does me more good than any medication they give me!

I've tried to give some practical advice above, if I could give some more emotional advice I would say that I think it's important to stay positive and to look for small victories at each stage of your treatment and celebrate them when they happen and remember new developments are occurring all the time so there is always hope....

Good luck all - I hope you can find something useful in the above...

Some great advice here, I think that the key thing is that our experience of cancer is going to be different and therefore our experience of chemo will also be. There are some practical tips that are relevant to all, however, so thank you for that.

Celebrate each victory like it's Waterloo!