Post-surgery recovery..
Going home and recovering from surgery can be hard. I spent lots of time resting (mostly sleeping) and taking the medication I was prescribed. Netflix was also hit hard. I was surprised that I didn’t receive any home visits, but the breast care nurses did telephone regularly. I also came home with a booklet for exercises to start as soon as possible. The key to effective recovery was movement which can be tricky given those blasted drains hanging from you. The emotional and psychological aspect of recovery is much trickier. I knew that I was waiting for the results from the sample of lymph nodes taken during surgery. I was hoping that this would evidence that the ba*%@rd lodger and his grubby mates had been successfully evicted. That they had not claimed squatters’ rights and that I could concentrate on finalising the fully refurbished ‘front room’. I also knew that these results would determine my future treatment plan. Chemotherapy? Radiotherapy? Worst case more surgery. They would also confirm the type of cancerous cells and whether I would require the longer-term drugs such as anastrozole or tamoxifen.
Post-surgery, I had what is referred to as cording. It’s a stiffness in the arm and it feels like there is a pencil within your veins. It’s hard and can be painful to the touch. It can restrict your movement. Massage will disperse the build-up. You may feel a ‘snap’ when massaging. I was assured it was normal. Always call your breast care nurse for advice.
I bought a large V pillow (the sort you use if breastfeeding) to support me. The breast care nurses gave me two small heart shaped cushions to use under each arm after surgery for comfort, It helps with sleeping. Having a bilateral mastectomy meant I couldn’t lay on either side and I also had the challenge of those blasted drains. The pillows helped. ‘I got my heart pillows from my breast care team. I was told that local charities make them for women who are having surgery. To avoid cross infection once they have been given they are not able to be passed onwards in the future. Check out with your nurses or do a social media search. Examples for group names are ‘breast friends’ and ‘pillow pals’.
'V Pillow' and 'Heart Cushions'
'Drain bags'
What to wear?
I bought a post-surgery bra from M&S. It was useless. It didn’t account for the swelling or drain sites. I wasted my money. I did buy soft bralettes (no wire) but needed help putting them over my head as my arm movement was restricted. Whatever you buy I recommend buying a larger size. Most supermarkets that have clothes have them in stock. I found Asda, Tesco and M&S non-surgical over the head bralettes much comfier. A loose-fitting vest or front fastening tops. I found no sleeves were better as they didn’t rub wounds (particularly under the arm). Be prepared for swelling, however, if you’re worried or concerned call your breast care nurses. They are invaluable.
If you do buy surgery bras it’s worth knowing that M&S deducts the tax for post-surgery bras. Ask at the till if they don’t automatically take it off for you.
I found out that Stella McCartney provides post-surgery bras. Check her website.
If they are out of stock I emailed the company directly and received one free of charge, they are soft, very comfortable and can be used with or without reconstruction. They are feminine and make you feel better about yourself during the recovery process.
Auxiliary Clearance (or Sentinal Lymph Node Surgery to me and You)..
Lymph Nodes! What are they?
Well, my consultant described them like a net within our body that caught and then flushed away all the nasty little blighters that could potentially do us harm. An intricate web. So, this surgery was completed in the hope that any cancerous microcells that had already travelled around my body would have been caught in the web and removed before any cancer could move into other areas/organs. Of course with any surgery there are risks and these include damage to the body’s ability to remove fluid and this can cause lymphoedema.
My experience of lymphoedema did not become evident until I had finished chemotherapy. I realised something was wrong when I returned to work and my suit jackets were too tight. Now I know I had put on a little weight from the steroids during chemotherapy and the sedentary lifestyle whilst recovering but this was more than that. I don’t think I fully understood the risks associated with a full clearance. Of course I made my decision based upon the potential risk that the cancer had spread further than the two nodes found during my mastectomy surgery. I was given a choice of options (radiotherapy to the armpit and chest wall or the full clearance surgery). I wanted the ba@*%rd lodger evicted in every way possible. So I stand by my choice and I live with a slightly swollen left arm.
Lymphoedema doesn’t hurt, but the skin feels tight, and my left arm feels heavy. The way I manage my lymphoedema is by lightly brushing the affected arm in one-way gentle strokes. I usually do this whilst in the shower and also when applying moisturising cream in the morning. I was also advised to use the same technique on the right side as this helps the flow of fluid.
I visit my lymphoedema specialist nurse regularly. Each appointment she measures the circumference of my arm (top, above the elbow and the wrist). This is to review and see whether the treatment options are working for me. I also have a specialist sleeve that I wear each day. I don’t wear this at night-time.
I have learnt from experience the how quickly an infection can spread. I had been preparing our Monday night chicken curry, happily chopping away at the onions when the knife slipped, and I cut the end of my thumb (ouch! that bloody hurt). A quick clean up, added pressure to stop the bleeding and a couple of plasters and I carried on, albeit with a throbbing thumb. What I did not fully appreciate was how quickly infection can spread and the significance in the role of my lymph nodes. Over the next 24 hours, the infection from the cut thumb spread and caused swelling and heat to my left arm. It started feeling itchy and I noticed a few rash-like spots. My arm felt heavier than normal, and I felt hot. The rash very quickly spread until I could not see individual spots and my arm became one blazing hot infection! I got to spend an overnight in A&E due to the seriousness and was pumped with high dosage antibiotics. I now know this as Cellulitis. For the following few weeks, I required a high dose anti-biotic. If you experience anything like this, call your GP or attend the hospital. As a precaution I now have 2 weeks’ worth of antibiotics at home and if I ever go away, I always take them with me.
I have found the Lymphoedema support network really useful with hints and tips relating to self management and care.
NHS lymphoedema treatment clinics often give short courses of MLD . However, it is not availManual Lymphatic Drainage) able at all centres. If you have difficulty finding a qualified MLD therapist, contact Manual Lymphatic Drainage UK. Or the British Lymphology Society has a directory on its website that you may find helpful.
Sliced Thumb - where the infection started.
First sign of cellulitis.
Infection spreading throughout arm.
Compression sleeve for lymphoedema.
Top Tips..
If you notice swelling to an area usually where you have had lymph nodes removed, contact the breast care nurses and they will refer you to the specialist lymphoedema nurse for an appointment. Left untreated it can become serious.
Make the massaging of the affected area part of your daily routine.
Always wear the sleeve or garment provided by your nurse. I asked for 2. They come via your GP so ask your specialist nurse to write to your GP with the specifics of the sleeve/garment. I found this really helpful and there is generally no delay.
When gardening or completing household tasks always wear 2 pair of gloves as any slight cut/infection to the area can cause infection known as Cellulitis
If you go overseas on holiday to a hot country keep your sleeve/garment in a small plastic bag in the fridge (I used a food bag). It is soothing and easier to put on.
For holidays Ask your GP to prescribe a course of antibiotics in case of insect bite or injury to the affected area. I always take 2 boxes with me (enough to cover a 2 week holiday).
You can carry an emergency card in your wallet with you explaining the condition and treatment.
Always use a high spf (factor 50 is recommended).
Chemotherapy and me..
The Ba@*%rd Lodger it seemed had rallied its mates and they had found another room to squat in! How bloody dare they! Because my cancer was hormone positive, and it had journeyed to my lymph nodes I was advised to have 6 rounds of chemotherapy. I felt overwhelmed. I was told that the chemotherapy would hopefully ‘mop up’ any stray micro cells that the bilateral mastectomy followed by the axillary clearance surgery may not have been able to remove. “A belt and braces approach” was what my treating Consultant advised. My Consultant Oncologist used a ‘predictor tool’ however it is recommended that if you are considering using this you do so with the support and knowledge of your breast care team. You will see that is requires specifics about your own cancer type, grade, size etcetera so I would suggest caution. Sometimes applying limited knowledge can result in misunderstanding medical information and that in itself can lead any ordinarily rational minded person into a perpetual state of terror.
There is so much to consider about the risks and benefits of having a course of chemotherapy and it is not for everyone. And there are so many different types of drugs and treatments. All I knew was that I was likely to feel really poorly and that I would at some point lose my hair. For me that was a real worry. Call me shallow but how you look and feel about yourself is a huge part of anyone’s identity and their mental health status. My diagnosis had already stolen my breasts, left me with more scars than a roadmap of Great Britain and only tearful memories of the carefree, fun-loving women I was pre-2020. I had always tried to look after myself and my short, bleached pixie haircut and thick black glasses was how I was recognised. It gave me a feeling of familiar contentment when I looked in the mirror. I knew the confident person staring back at me. The ba@*%rd lodger and his band of mucky mates had robbed that from me. I knew that this part of my treatment would make me finally look like a cancer patient. I wasn’t ready for that. I had been able to disguise (for the most part) my ongoing treatment. It’s easy to pull on a sweatshirt, do your hair and makeup and ‘smile for the world’ even when internally you are scared to death and feel like shit! I was angry, upset and really scared. I had hoped after challenging surgeries that changed my physical self forever, I could finally focus upon recovery. However, the ‘ba@*%rd lodger’ was rooted firmly and appeared to be claiming ‘squatters rights!’. There was only one thing for it and that was to metaphorically roll up my sleeves and get on with it.
At my planning appointment the Oncology Consultant and nursing team explained the benefits and risks of my plan and I signed consents; I hadn’t realised that it would slam me into a medical menopause or truly understood the significant impact upon other organs in my body. Whilst it was a recommended plan, it was still my choice as to whether I wanted to proceed. It was a no brainer for me! I had come so far and so not to take the chemotherapy and risk a reoccurrence seemed nonsensical. I had almost physically recovered from the two previous battles with the ‘ba@*%rd lodger’ however he was still there, lingering like a pungent smell in the air. The war with this intruder was not over.
I had 6 rounds of chemotherapy on a rolling 3-week cycle. Before each session I had to go for my bloods taken to check my levels and general health. I had 3 of a red fluid called epirubicin (commonly referred to as EC) that was injected directly into me via a cannula. This drug was lovingly nicknamed the ‘red devil’ by the chemotherapy nurses. I hadn’t realised that the first time you go to the loo after your sessions your urine is a red/pink colour! Don’t be alarmed…. It’s a normal process. After all, what goes in has to come out?! I also had an infusion of fluids to flush it through called cyclophosphamide. With this drug I also experienced a tingling inside and around the vaginal area instantly when the cyclophosphamide enters the body. Hey! You have to take the positives out of any situation. Mheh! It doesn’t last long, and the oncology nurses explained that many women experience this! My appointments usually took about 1 hour and whilst I couldn’t have anyone with me due to the covid pandemic the nurses were amazing and there was plenty of hot or cold drinks on offer. This was my one day out and so I put on my make up, chose a head scarf and my fancy pants!
I also had 3 of Docetaxel (commonly referred to as DC). This is given the same way, through a cannula in the back of my hand. I found DC much more difficult to manage. I learnt that the culminating side effects of treatment are challenging but the chemotherapy nurses are a great source of support. If you are struggling call them. You can receive different medications to help with the sickness, mouth sores, gum issues and generally feeling ill.
Due to the pandemic continuing my chemotherapy took place outside of the main hospital. And I was alone. The drugs they give you not only attack the cancerous cells they also attack the ones keeping you fit and healthy. They break down your body and as a direct consequence they compromise your own immunity. Not only was I worried about the chemotherapy, but I also had to manage the worries that COVID19 could also finish me off! Could this get any better!!
After each session I also received a 7-day course of steroids, along with a 7-day pre-loaded filgrastrim injection that goes into the stomach that is to treat neutropenia (low white blood cells). Anti-sickness medication is given, and I encourage you to take them. I suffered with peeling gums and sore throat that also ulcerated. Difflam and gelcair worked for me. They are prescription drugs from your chemotherapy team (I was advised not to use over the counter mouth washes as whatever they are made from may react with your prescribed chemotherapy.
I started losing my hair on day 11 after the first EC cycle. It just came away in my hands. I found being mentally prepared helped a little. I had spoken with my family (more in an attempt to prepare them) and when I knew that chemotherapy was necessary, I had my hair cut shorter in preparation for the inevitability that it would fall out. Even though I knew it was going to happen I still felt anxiety. I mean, I didn’t know if my head was the shape and size of a walnut. Another emotional and psychological challenge to get through. I felt so sad. So angry. But my family were amazing. My wonderful partner shaved my head for me. My mum, brother, sister, son all sported a crew cut in my honour. My brave daughter shaved her long hair to a buzz cut! The support from my family was invaluable and was even more special to me as the covid pandemic and my compromised immunity meant that I could not be with them physically. I know that my treatment was as frightening for them as it was for me.
Another great accessory, would be head wraps, to keep your freshly bald head warm!
Top Tips..
Get the nurses to write on each of your boxes when to take your drugs. You will come away with a bag full of medication.
Buy a thermometer as monitoring your temperature is really important. It will be the first thing the nurses ask when you call them.
If you are unsure about how to administer the stomach injection there are Utube videos that show you how. You can always get your partner/family member to do them for you.
If the nurses struggle finding a vein for the chemotherapy cannula don’t be surprised if they put your hand into hot water. It helps the veins pop! And if you have a particular nurse that can get your cannula in first time don’t be afraid to ask for that nurse each time.
I cut up pineapple into slices and kept it in the fridge for after each chemotherapy session. It soothed the mouth/gums.
Buy a baby/childs toothbrush. Your gums will become really sensitive. Softer bristles will help.
It is likely that everything will taste horrible (peppermints help during treatment and mint tea will help with the sickness).
If you feel particular sick/dizzy during or after an infusion, ask the nurses to slow down the bag. Surprisingly it does help the body accept the drug into your system a little easier.
I painted my nails with dark nail polish as it is supposed to help with protecting the nail beds. I haven’t seen any scientific evidence of how this helps but there seems to be a common acceptance from women going through chemotherapy that it does. My nails did eventually split however I only lost my smallest toenail. Worth a try!
I had a chemotherapy bag. Music, charger, lip balm, reading book/kindle, knitting or anything else to pass the time. Peppermints are good for reducing the ‘metal taste’ in the mouth. You might want a fleece blanket, fluffy socks. Even a hat to keep your head warm.
Most importantly keep your chemotherapy nurses/team telephone number handy. If you’re poorly/ have questions call them.