Thursday, 27 July 2017

My top tips - post surgery and during treatment


I thought I would share some tips that have helped me after breast cancer surgery and during treatment.  I'll try to keep this up to date as I learn more from going through the different stages of my treatment. 

These tips are based on my own experience so it might be worth double checking with a cancer professional just to make sure that some of them are suitable for you. 

My tips

  • Going to appointments: take someone with you (if you can) when, say, going for initial appointments: in the early days I was bombarded with information and my mind couldn't think straight. I was in shock and despair.  I couldn't take everything in so having someone who can make notes or remember important information is really helpful.  Don't be afraid to ask questions either.
  • Try crop top bras: I found them to be more comfortable to wear post-surgery than a traditional bra.  You don't have to put your arms behind your back to do them up and they don't dig into you either.  But try to step into them rather than putting them over your head, otherwise you can get all trussed up and hurt delicate areas just like I did (see Home sweet home).
  • Carry a small first aid kit: I had all the lymph nodes removed from my armpit.  That brings a risk of lymphoedema in the affected arm from, for example, cuts, burns, sunburn, or insect bites.  So just in case, I carry a small portable first aid kit.  In it I have plasters (Band Aids for American readers), a small bottle of hand sanitiser, and small tubes of antiseptic cream and sunblock.
  • Keep a journal:  I use it to write down all my symptoms and how I'm physically feeling.  This is really useful, for example, if you have to ring the Oncology Helpline or when getting assessed during your treatment.  I have been treated quickly when I've sought advice about worrying symptoms, plus the cancer doctors use the information to assess your treatment. Also it's useful if you decide to write a blog!
  • Use cling film: I have a PICC line (see Second chemo and its aftermath) and I can't get the dressing wet.  So when I have a shower I wrap my arm in cling film before putting on one of the plastic sleeves I was given.  I've just about mastered the art of putting on the cling film by myself by sticking the end on the edge of the sink, putting my arm on it and then wrapping the film around the dressing.  
  • Try pineapple: my taste buds have been compromised due to the chemo, plus I get a very dry mouth.  I eat tinned pineapple which helps.  It also can also apparently soothe a sore mouth. Eating pineapple ice lollies are quite good too I've heard.
  • Eating boiled sweets: be careful.  I ate some to help soothe my dry tongue but I cut the roof of my mouth on them.  They were rough, fizzy sweets and the Oncology Helpline were worried that my mouth would break down and become ulcerated.  I got some special mouth spray and gel from my doctor, which helped to heal my mouth and prevent things getting worse.
  • Get outside or meet friends: it's good to get some exercise (see Getting out and about) and meet friends but be aware of anyone who might have coughs, colds, sniffles or snuffles.  You don't want to pick up an infection.   Remember to wear sunblock and take a bottle of water if you go out though - you don't want to get burnt (chemo can make that worse) or dehydrated.  Exercise and meeting friends has really helped to improve my mental wellbeing. 
  • Moisturise your skin: chemo can make your skin go a bit dry and also you don't want cracked skin on any areas of the body at risk of lymphoedema.  I use aqueous cream (a bargain from a discount store) and my skin has never felt so soft!
  • Dealing with hair loss: I gradually got my hair cut shorter and had violet streaks put in.  Hell, I thought I might as well look a little eccentric whilst I was at it.  Then when it started to fall out, my husband clipped it to within an inch of its life.  I wanted to get it cut short so that hopefully it would be less traumatic when it did fall out.  It sort of helped but I still felt quite sad (see I am not my hair).   I also wear a sleep cap at night which helps to keep my head warm as it can get a bit chilly.  I look a bit like Wee Willie Winkie from the nursery rhyme when I get up to go to the bathroom in the night.
  • Searching the web: be VERY wary about looking for information about your cancer, treatment or survival rates etc online.  I can't stress this enough.  Some website content can scare the living daylights out of you especially sites who have their own interests at heart, are alarmist or potentially offer incorrect or out of date information.  You don't need this in your life.  Check out official or reputable websites to get the best source of information (please still read my blog though 😃).

Do let me know if you have any other tips you'd like to share in the comments below.  I'd love to hear from you.

Until next time.

PS

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7 comments:

  1. Hi Karen, Great tips and advice, got my first aid kit ready :). I'm having my surgery tomorrow 4/8 and just can't wait to get it over with. You look well in the photos. Best wishes Michelle xx

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    1. Many thanks Michelle. I hope the surgery went well. Let me know how you got on xx

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    2. Hi karen the surgery went really well and had my dressings taken off yesterday. Just taking paracetamol as and when. My appointment is next Wednesday when I get the pathology results and my treatment plan will be confirmed. Best wishes and take it easy. Michelle xx

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    3. Hi Michelle, how did you get on with your results and your treatment plan? xx

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    4. Hi Karen. I saw the surgeon last Weds and the good news is they got clear margins and no spread to lymph nodes. its a grade 3 so they are offering me the oncotype DX test. This will show the likelihood of recurrence and if chemo is needed. When i asked when the results would be back they told me i had to see the oncologist first as i have to sign my permission before the test is done and as it goes to the USA could take another 4 weeks for results to come back. My oncologist appointment is 29 August so it could be end of September before my treatment plan is known. If i don't need chemo it will be radiotherapy followed by tablets for 5 years.
      I asked why this test wasn't discussed with me earlier so i could have signed forms before op to avoid unnecessary delay but was told this is how it works. I think I feel a letter coming on about processes, delays:(

      Hope you are coping with the chemo. xx

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  2. I'm late reading this! Excellent tips, Karen, for those about to start on the journey. One more light-hearted tip from me: keep your wig(s) - they come in handy for appearing in pantomime! 😂

    Keep well, lovely. x

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    1. Thanks Maureen. My pantomime days are long gone :) someone has suggested I raffle them off at the end of treatment. I might think about doing that xx

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