My journey began to slow down to a much more manageable pace. My appointment with the oncologist in August 2022 was really positive and now it was a case of taking the medication, annual mammograms and lots of self care.
My prescribed drug Tamoxifen (endocrine therapy) had an instant effect on me and I am still trying to adjust to the side effects. Acupuncture helped with the hot flushes but I still get them. They are less frequent though and I’m just a few degrees hotter in general. Occasionally I feel a bit awkward that I’ve got a glistening forehead or my hair is damp from sweating and I feel like I could be contributing to global warming but I manage ok! Three months after receiving the Sara Lee Trust complementary therapy, MacMillan can re-refer for some additional sessions. I will definitely consider either more acupuncture or maybe some reflexology.
Dear Mother Nature, please check the thermostat, someone has set it to HELL!
These days I am ‘infamous’ for my fan collection! I have a traditional fan in my handbag at all times when I go out. I own a few! I also have a portable handheld fan which is rechargeable through a USB port and a neck fan which looks like a pair of headphones! The reason behind that purchase is that I can use it hands-free when I’m working or crafting! The only problem is it’s very loud and I can’t hear much when I’m wearing it so it has its limitations! Finally, my husband fitted fan lights in all our bedrooms with remote control. They are an absolute game changer! Not only are they brilliant for keeping cool, they also help with my Tinnitus by overriding the sounds in my head. I’m not sure ‘Queen of Fans’ has the best kudos but I fear I’m in danger of being a contender!
I’m still hot…it’s just now it comes in flashes!
I was invited to my first annual mammogram at the Conquest Hospital on 15th December 2022. Only my right side needed to be screened and it was all very straightforward and efficient. I was told it might take a few weeks to hear back. Despite the opposite happening earlier on in my diagnosis I decided to take the view that the longer it took them to get back to me, the more likely it wouldn’t be bad news. That might have been what I told myself but the reality was it was another agonising wait for the reassurance.
My Macmillan nurse contacted me between Christmas and New Year to check that I’d had a response regarding my medication queries and she asked me how things were generally. I asked if she knew how long I would have to wait for my mammogram results and she kindly said she would check on her system to see if there was anything there. She was able to tell me straightaway that there were no concerns. Although she said I might not get this confirmed in writing for a couple more weeks, it was a huge weight off my shoulders. That night we had a big family Christmas get together planned so it was perfect timing and a great opportunity to celebrate. My husband often receives lavish gifts from clients and we had a bit of a champagne collection, including the likes of Harrods, Fortnum & Mason, Piper Heidsieck etc. What better excuse than to treat us all to the finest bubbles?
“Champagne! In victory one deserves it, in defeat one needs it.” – Napoleon Bonaparte
I had gone back to work in November 2022 on a phased return. Initially I thought I’d be ready before then but as I got nearer to the earlier planned date in October I just didn’t feel ready, both physically and emotionally, so it was agreed that I would start back after the half term. It made sense to start at the beginning of a new term anyway. I started at three hours a day with a gradual increase. The first morning was ok and I felt fine all day until about 8.30 pm when I suddenly started to feel really unwell. I wasn’t sure if it was something I’d eaten as it came over me so suddenly. I was up most of the night vomiting and felt completely wiped out the next morning. I now think it was more likely a sickness bug. Although I wasn’t sick any more that day I felt very weak and tired from the lack of sleep but I decided to do some work on my laptop from my bed! I was fine by the third day so in the end I did complete my first week of agreed hours. The following week was absolutely fine although I developed a bit of a tickly cough towards the end of the week. We had a face-to-face team meeting at the office where I met three new colleagues for the first time and it felt good to be back in the team. However, I spent a lot of the meeting trying to suppress the cough and drinking loads of water! By the next week I had full-blown flu. I ached from my head to my toes and ended up spending the best part of three days in bed. I did daily lateral flow tests but not even the faintest line came up so I could only accept that I hadn’t caught Covid for a second time. Ironically I was booked in to have my flu jab and fourth Covid booster that week. I also had to cancel my appointment with my plastic surgeon on the Friday. Unfortunately it was then delayed until February 2023 which was disappointing as I was at the point by then where I wanted to properly move on and put the whole awful experience in the past. I now know of course that, sadly, coming to the end of all the physical procedures does not tie everything up nicely and take away all the fears and anxiety. Nevertheless I will be glad when it’s been done. As much as I’m not overly concerned about that final stage of reconstruction, not having a nipple on one breast is a constant reminder of what I’ve been through and maybe it will be another step towards feeling more ‘normal’ again.
As I’ve mentioned, I was fortunate to receive some acupuncture to help ease my hot flushes. At the initial appointment the therapist took my details and she also informed me about the range of complementary therapies and activities on offer to cancer patients. She put my name forward for a charity called ‘Look Good Feel Better’ who offer confidence-boosting workshops. I went along with a friend of a friend who had also signed up for the same session. We were both a bit apprehensive but it was a very small friendly group and it was nice to be able to talk openly to others who were going through or had been through breast cancer. Apart from when I was a teenager I’ve never been massively into cosmetics and I wear minimal make-up even when I go out so it was an unusual activity for me to take part in. There were two lovely ladies running the session and they gave out goodie bags. We each received a large make-up bag full of treasure! They all differed slightly but essentially had similar products from a variety of brands, for example, we all got a bottle of perfume. Mine was ‘A Scent’ by Issey Miyake. There was an eyeshadow palette, blusher, concealer, mascara, foundation, lip liner, eye liner, lipsticks, brow pencil, moisturiser, toner, cleansing lotion, brushes and a ‘Chapstick’! The brands were amazing – Clinique, Lancôme, Estée Lauder, Morphe, Benefit, Tropic, Maybelline, No7 and Max Factor! What a treat! The ladies running the workshop took us through a basic make-up demonstration using a selection of the products in our collection. We were told that the charity has a huge storage space where they hold masses of contributions donated by cosmetic companies for all of their workshops. It’s such a great idea to help women get back some confidence after the trauma of their treatments and the visible side effects such as hair loss, weight gain/loss and surgeries.
When you feel good, you open the door for positive energy to reach you.
The other good thing about the evening was that I gained more information from the other ladies about other charities and support groups. For example, there is a charity called WOLO Foundation (We Only Live Once) which helps families affected by cancer in Sussex. They provide a range of services including therapy, legal services, childcare, cleaning, family treats, family photo shoots as well as purchasing resources/equipment from dehumidifiers, medical equipment and bedding to art and crafts materials, toys and mindfulness activities. This is a particularly good charity if you have children as they organise days out and events such as trips to the pantomime, woodland activities and sporting challenges for all ages. The list is seemingly endless and they have provided such amazing support to so many people.
A couple of the ladies had also joined the ‘1066 Pink Ladies’, a local support group who meet up once a month. I had heard about this while I was going through my treatment but I didn’t feel ready to listen to other people’s stories as I feared it might make me more anxious. I remember my GP advising me to be cautious of this as he said everybody’s experience of cancer is different to another’s and “your cancer is your cancer”. This was really helpful to me. I just felt that it would be better for me personally if I waited until I was through my treatment before hearing about anyone else’s. By the time I attended the workshop I was coming to the point where I felt I might like to join a group. However, it does pose a bit of a dilemma in that a group such as this one can provide reassurance and support but, at the same time, is another reminder of the cancer and potentially might inhibit my mental recovery. Anyhow, one of the ladies said she would pass on my name to one of the organisers and put forward my request to join the Facebook group which has to be agreed by them. I later received a phone call and had a nice chat with one of them. I told the lady about my many years of holding cake sales for MacMillan Cancer Care and she knew about and had previously attended our events! Following that, I was introduced via a post on the Facebook page and received lots of lovely welcoming comments. I still haven’t attended any meetings or events because so far they have clashed with other arrangements but I might go along and check it out for myself one day…
Coincidentally since I wrote the above I have asked a question on the 1066 Pink Ladies Facebook page. I had been getting mild cramp, mostly in my feet, for a few months but it has revved up lately and a couple of times I’ve had agonising pain in my calves. The worst time was in bed one morning when I literally cried out from a sudden and very powerful spasm and my husband advised me to stretch my leg and pull my foot up towards my shin. It actually made me panic a bit. I also struggled in my Zumba class that week when we were doing squats on the balls of our feet. Sometimes I can feel the tightness in advance and try to keep as relaxed as possible to avoid triggering a spasm. Other times there’s no warning and it happens suddenly.
The responses I received from the Pink Ladies community were helpful but sadly not very reassuring in terms of the longevity of the side effects. The practical advice was to always drink plenty of water and some suggested specifically tonic water and magnesium. I’m guessing the tonic water is because of the quinine content. I have done a bit of research on quinine and Tamoxifen and it seems that it would be safe if consumed in moderation. However, I can’t stand carbonated water of any kind as it makes me feel very sick so it’s not really an issue! I’ve been taking magnesium supplements for years now but I might increase the dosage to see if it helps to alleviate some of the leg pain.
These are a few snippets from the comments I got…
“I was on tamoxifen for 5yrs and never found a cure for the night cramps either. Just keep hydrated is all I can suggest”
“For the whole 7 yrs I was on tamoxifen I had awful cramp. Then went on to Letrozole for a further 7yrs and still had cramp. Just think it’s a side effect “
“…..I suffered from this too. I’m no longer on it and I haven’t had any nighttime cramps at all. Take some tonic water and try to stay well hydrated.”
“Omg! I didn’t tie the two up , but I thought my lower leg was going to fall off about a week ago & the residual pain is still there . I didn’t know that tamoxifen was the likely cause….”
If you’ve read my previous blogs you will know that I had to stop taking zinc supplements due to zinc being deemed an inhibitor of Tamoxifen. Consequently my finger nails deteriorated, splitting and flaking, to the point where it looked like I had bitten them down to the quick. After a lot of unsuccessful searching for nail remedies that do not contain any zinc I decided to give the age-old remedy of jelly cubes a go! I have been eating two cubes every day and after a couple of weeks I now have respectable nails again. I wasn’t sure what the science behind this was so I decided to look it up! It seems to be mainly due to the ingredient pork gelatine which is a high protein product. Protein consists of various amino acids, and gelatin contains several of these.
I also discovered a number of other possible benefits to gelatin. However, more research is needed to confirm whether consuming gelatin can specifically improve some of these suggested health benefits.
“Eating gelatin may help boost collagen levels and support skin elasticity. Gelatin contains glutamic acid, which the body can form into glutamine. This substance may help promote a healthy mucosal lining in the stomach and aid digestion.
Gelatin contains lysine which plays a role in muscle and bone health. It helps the body absorb calcium which helps keep the bones strong and prevents bone loss.
Gelatin contains high levels of the amino acid glycine. Some studies suggest that glycine may improve sleep quality and other neurological functions.
Collagen is a protein that helps form bones, muscles, and skin, and it is crucial to overall health. Companies process animal-derived collagen to make gelatin. Gelatin and collagen contain similar proteins, and laboratory tests suggest that consuming gelatin as part of a varied diet may provide comparable benefits to consuming collagen.”
(Ref: medicalnewstoday.com)
According to one older study gelatin may also promote hair health.
Interestingly I’ve had a lot of comments lately about how nice my hair looks and I don’t know if it has benefitted from the gelatin or if it’s because I’ve been in the sun a lot and it has turned much lighter. My hair is usually very healthy anyway but I do go through periods where it feels a bit dull so who knows….?
Whatever the reason I’m going to continue until hopefully I have nails I can undo screws with!
It’s been a few months of adjustment and awareness with ups and downs. My sleep quality varies but I am now drinking decaffeinated tea and coffee and I think this has helped. I seem to be getting off to sleep quicker for the most part but now I seem to be waking up in the early hours. Not always, just some mornings.
The mental struggle varies and I’ve had a couple of meltdowns but I think sleep deprivation makes it hard to manage your mental health, not to mention the roller coaster of hormones so I’m trying to learn to be kind to myself and to share how I’m feeling a bit more instead of internalising everything and saying I’m fine.
I’m only too aware that I’ve ‘dodged a bullet’ and I’m trying very hard to stay positive and gently get my mojo back, living life to the full as I did before life threw a huge curveball at me.
“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.” ― Marcus Aurelius (Roman Emperor 161-180).
Hoping for a Happy Ever After 