A year ago today I was given a diagnosis of breast cancer. I have been through six cycles of chemo, which were gruelling and the side effects were brutal, almost total loss of body hair, nausea, vomiting, exhaustion, weakness, to name just a few. Chemo has changed the texture of my hair – it used to be straight and is now wavy, and that has not been easy to accept after more than 50 years:
I had a mastectomy as a day case during the national lockdown due to covid-19, so Michael had to drop me off outside the hospital and collect me later that evening. I chose not to have reconstruction and am very thankful that the prosthesis makes me look “normal” and you can tell it isn’t real.
A year ago today I was forced to face up to cancer in my life.
Today I am saying “goodbye and good riddance” to cancer.
Earlier the week I was finally fitted for my permanent prosthesis. It should have happened about 6 weeks after surgery but the covid-19 crisis means that the reps who normally fit prostheses weren’t allowed in the hospital. I’ve had a temporary prosthesis known as a “softee” since surgery but my permanent one gives a much more natural shape.
Being fitted was quick and easy – the first one was perfect – and I left the room wearing it in less than 15 minutes. Even though we had been shown and handled prostheses during appointments before surgery I was surprised at just how heavy it is – nearly 1.25 lb!
Apart from five years of monitoring through annual mammograms and five years of hormone medication my cancer treatment has finished – a total of 10 months from mammogram to receiving my permanent prosthesis. I can only say a massive thank you to the staff of the oncology and breast surgery departments and the local private hospital where I had surgery – the care I received was excellent.
The last 10 months have been very challenging and gruelling:
October 2019: first ever mammogram, biopsies and ultrasound
November 2019: diagnosis, MRI scan, PICC line insertion, start of chemo (6 cycles)
December 2019: four nights as an inpatient due to my body reacting to first chemo, a very strange Christmas as I wasn’t able to be with my parents and sister due to infection risks, curry cooked by the son for Christmas dinner
January 2020: after three cycles of chemo the tumour had shrunk to about half the size it started at, a low-key birthday with coffee and cake with my boys, mum and sister but dad wasn’t well enough to join us
February 2020: dad was admitted to hospital and diagnosed with a terminal cancer, surviving just 13 days – I was so glad I was able to visit him between my chemo cycles
March 2020: last chemo cycle, covid-19 lockdown imposed, put into shielding just before dad’s funeral, attended dad’s funeral with just the 5 of us and no wake afterwards, surgery postponed indefinitely, started a phased return to work but only allowed to work from home
April 2020: surgery was only delayed by 10 days and was rescheduled at the local private hospital, had my first ever operation (mastectomy and sentinel lymph node biopsy) and was home the same day, had half a pint of fluid drained from wound
May 2020: took 2 weeks off to recover from surgery, attended results appointment and was told chemo shrank the tumour from nearly 5 cm to 1.8 mm and the sentinel lymph nodes were clear of cancer, returned to working at home, contracted covid-19, albeit mildly, when there was a small outbreak at Michael’s work
June 2020: recovered from covid-19 after about 11 days, returned to work, GP verbally released me from shielding, had adrenal function tests to investigate whether five years on and off steroid treatment had damaged my adrenal function (negative, thankfully), proven to have antibodies to covid-19
July 2020: started being able to return to the office once a fortnight and then once a week and received a lovely welcome from the team
August 2020: received my permanent prosthesis
Despite everything the outcome is good and I cannot thank Michael, our son, my mum and dad, sister and best friend, N, enough for their support through this – without you all this journey woukd have been so much harder.
A week ago I had a conversation with my GP about my shielding status. He agreed that having finished chemo at the end of March by the end of May my risks were reduced to a moderate level. When I let my manager know, she agreed that I could start to reintegrate into the team by going into the office. My first day was last Friday and it was absolutely wonderful to be back in the office. Only two thirds of the team can be in the office at any one time due to social distancing but I was able to see two of the team and was greeted by a lovely welcome from the rest of the team:
One of the team sent a pic to the team WhatsApp group – I think the smile on my face says it all:
On Sunday we joined my sister at mum’s house and enjoyed the first family meal since before I started chemo treatment. Dad’s empty chair at the dinner table was very poignant but we had a really lovely time together and will be doing it more often now that we can.
My hair is growing back nicely, albeit greyer than it was, but I’m not impressed with the appearance of the family wave. I was warned that hair colour/texture may change as a result of chemo so am choosing to go with the flow:
As of next week I will be going into work weekly, but will be able to see the whole team when I go in to minute a Team Meeting, which is being held in the Lecture Theatre, a venue which can easily accommodate the ten of us with social distancing. Really looking forward to seeing everyone and starting to reintegrate into the team.
Although we both had covid mildly, it took Michael’s body 26 days from the first positive test to get rid of the virus and get a negative test, which his employer required for him to be able to return to work. As I’m shielding and working from home I wasn’t required to get a negative test. Despite feeling fit and well Michael had to remain in isolation, as advised by the government department responsible for testing, which had a massive effect on his mental health. Finally, last weekend Michael got the negative test result he needed (first reason to celebrate)and returned to work on Monday night. Of the four men who went sick at around the same time, Michael was the second to return, and the other two are still off sick. During his first week back, he has worked 10 hours overtime, i.e. equivalent to more than an extra day, and suffered abusive language from from two drivers when he asked them to use the PPE provided by the company. The drivers, in general, seem to think social distancing in the workplace and using PPE doesn’t apply to them and yet the warehouse staff have had to deal with a total of five men go off sick. Last night, Michael didn’t bother to challenge anyone as management said they would deal with it although there isn’t any evidence so far. Michael is exhausted after his first week back so we’re going to have a very quiet and relaxed weekend.
On Tuesday I had tests to check whether my adrenal gland was damaged by five years on and off high dose steroids, which involved blood tests. The veins were not very co-operative and the injection between the blood tests hurt so much that I was nearly reduced to tears. While they had a co-operative vein I asked if they could do the blood tests that I was due to have for my haematologist today and was delighted they agreed and that they were also willing to take blood for the staff covid antibody test. My endocrinologist rang me with the results of the adrenal gland test yesterday and I’m delighted to say that it is functioning normally. She also confirmed my thyroid function is normal on the medication I’m taking and that my platelets are holding up nicely (second, third and fourth reasons to celebrate). In addition, my covid antibody test came back positive (fifth reason for celebrating). Although there is uncertainty about what having antibodies means, it tells me that my body is getting back to normal and is operating properly after chemo (sixth reason to celebrate).
A few weeks ago I decided to join Slimming World and it’s been going well. We have the option of a Zoom meeting and it works really well. At my fifth weigh-in since joining, I have achieved my 1 stone award (seventh reason to celebrate).
This Sunday is Father’s Day and for the first time my dad is no longer here to be celebrated, but we will celebrate Michael being a fantastic father. Michael suggested we combine celebrating Father’s Day for him with a belated Mother’s Day celebration for me (eighth and ninth reasons to celebrate).
Since last October/November we have been through a lot and want to celebrate all this good news – how are we going to celebrate?
We discovered that our favourite Italian restaurant is offering takeaway meals which can be delivered (or collected), so we are going to order a really lovely meal from them either tonight or tomorrow. Of course, the son is welcome to join us, but I suspect he would prefer to order from somewhere else, which we will happily do.
The son’s school started face-to-face sessions for post-16 students of an hour per subject but because I’m still shielding and we are concerned that lockdown is being eased too much too soon, he is not going in for these sessions, but is joining all streamed classes. The first day of face-to-face sessions started today and his Economics teacher tried to include the son via streaming but the school internet service is too unstable for it to work. The same teacher is covering Business Studies so that won’t happen today. There’s been no provision offered by Computer Science. This is very disappointing but the son expects to receive additional homework.
The good news is that the son now has time to make Michael a Victoria sandwich, which Michael asked him to do last weekend.
It’s been a few weeks since I updated the blog and that’s because there wasn’t a lot to report. However, the last couple of weeks have been very stressful on this household but hopefully we are returning to lockdown normal now.
Yesterday was six weeks since my surgery and I am healing well. I have been off pain relief for more than ten days and have continued with the post-surgery exercises to good effect; my shoulder movement on that side has improved well, and I have to continue with the exercises for the rest of my life. I now have proper hair rather than the fuzz that grew back initially:
I admit to feeling very happy that I haven’t had to deal with not being able to visit hairdressers during lockdown – my hair was last cut in December when it started falling out and I had it shaved off completely.
On the day of my last blog post Michael started showing symptoms (a temperature of 38C) of covid-19 and tested positive. He was unwell for just a couple of days and then recovered. He rarely coughed and felt like he had a cold and only had a high temperature on one occasion, so his symptoms were not really what the public has been led to expect. In order to return to work he had to get a second test and was tested on day 11. It came back positive, despite him feeling fit and well, and we were both devastated. We have since heard that some research has shown that someone who has recovered from covid-19 still shed dead virus cells but the test doesn’t distinguish between live and dead cells. That meant Michael couldn’t return to work and is still home but he is going for a third, and what we hope will be his final test, later this week.
Obviously the three of us went into isolation, and I had to cancel an appointment for blood tests for my haematologist and an appointment for seroma to be drained, which forced my body to reabsorb the fluid and I’ve had no more problems.
Unfortunately I became symptomatic a few days later and also tested positive. My initial symptom was the hint of something developing in my throat like I was starting a cold and I went for testing the same day I started feeling like that. Five days later, I realised I couldn’t smell anything at all and my taste was limited to sweet and sour but little else. Eating and drinking with no smell and virtually no taste is a very weird experience!
In myself, I started to feel better but last Sunday I felt generally unwell and by lunchtime had a temperature of 38C. A colleague from work who is a nurse advised me to call someone for help/guidance so I rang 111, who then passed me to a clinical adviser, who kept putting me on hold to check information with someone clinical – I didn’t get it either! They then arranged for the Out of Hours service to call me back. At this point I was getting concerned that I would be admitted to hospital. The GP who rang me went through my symptoms and medical history and advised me to take regular paracetamol and monitor my temperature. The advice was that if my temperature stayed high despite taking paracetamol I was to call back. I’m really pleased to say it responded well to paracetamol and I didn’t have to call back.
One thing I was told was to stop using a fan while I had a fever and I queried this with my colleague – apparently when you have a fever using a fan on your skin make your body raise its internal temperature.
The next morning my temperature was just within the normal range and that was 12 hours after my last dose of paracetamol. I felt so much better, too. Yesterday I felt significantly better and when the son cooked bacon for breakfast I could smell it slightly, which made me stupidly happy!
Today I returned to working remotely, which I thoroughly enjoyed. I still have virtually no smell or taste, but have heard reports that it can take a month for taste and smell to return fully, so am just going to have to be patient.
The son has managed to avoid covid-19 completely and we are very thankful for that.
The son asked for the ingredients to make a Lotus Biscoff cake recipe he’d found online a few weeks ago and I’ve struggled to get some of the ingredients. After I amassed everything he needed apart from the light brown sugar, we decided he could make it with normal caster sugar and today he went ahead and baked it:
He wasn’t as gentle with taking the greaseproof paper off the cake so it looks a little scruffy, but I can confirm the sponge is lovely and light and, as far as I can taste, it’s really yummy. He’s a great cook!
It’s now a month since I had surgery. On one level pain is reducing as my body heals. Although I didn’t need seroma (fluid accumulation) to be drained last week, I am starting to wonder if it needs to be done this week as I have tightness and discomfort. However, I’m waiting to see if my body does what it should do and reabsorbs the fluid.
I had a telephone review with my haematologist and have to have blood tests later this week to check how the platelets are doing. I had a telephone appointment with my oncologist to discuss which hormone therapy I will have to take for the next five years. Waiting for my GP to receive the oncologist’s letter and prescribe.
I’ve been back at work a week, albeit remotely, and am loving it!
The cancer in the breast that removed was just 1.8 mm in size. The six cycles of chemo I had shrunk it from 4.5 cm. Lumpectomy wasn’t an option for me as my other health conditions mena I can’t have radiotherapy, hence the seemingly drastic surgery.
The surgeon removed four lymph nodes and there was no sign of cancer in any of them, which is the best possible news – so happy!
Going forward, I will have annual mammograms for five years and will need to take a hormone treatment for 5-10 years. Due to my health conditions I can’t take the standard drug, so I have an appointment in a couple of weeks with my oncologist for them to sort out which drug I can have.
Feeling quite emotional (in a very good way) and will be celebrating with a pink G&T tonight. More major celebrations will follow when it is feasible and I am out of shielding.
In addition, I had 160 ml of fluid drained. The nurse thinks my body might be able to absorb future fluid retention but I can still have it drained if it is troublesome. We asked about being fitted for the permanent prosthesis, which is normally around six weeks post-op. However, with lockdown fittings aren’t being scheduled at present and I have been put on a waiting list to be called at some point in the future. In the meantime I have the “softie” to insert into my bra, which gives a decent enough shape.
I’m doing OK, although fluid is building up again and that causes pain that paracetamol doesn’t really touch. Tomorrow morning I have an appointment at the hospital to get results of the sentinel lymph node biopsy and check how I am recovering. When I had the seroma drained last week, I was told that if it needed to be drained again it would be done as part of the appointment.
As my cross-stitch is too heavy to hold at present, I bought a 5D diamond painting kit, which is quite large and definitely ambitious for someone who hadn’t heard to 5D printing before a friend mentioned it. It’s really relaxing and I’ve done a second session on it this morning and did the red in this picture:
This afternoon I had an appointment in the seroma clinic to see if the fluid around my surgical wound needed draining. It did and I was relieved of 280 ml – that’s half a pint! The area around the wound is less tight and my range of movement has improved.
The nurse also confirmed that the wound is healing well, which was reassuring.
I have an appointment for biopsy results next Thursday and the need for further drainage will be assessed (and done, if necessary) then.
The night of surgery I didn’t sleep well at all – I’m a side sleeper, usually swapping sides several times a night. I cannot sleep on my back, so for a while I’m limited to sleeping on just one side, which causes immense hip pain. I was surprised at how well I felt the first day after surgery and managed to stay up for most of the day. Some weeks before surgery my closest friend, Nicola, gifted me a heart-shaped cushion, designed for post-surgery. I cannot begin to describe how valuable a gift this is- it’s exceedingly soft and puts my arm in a perfect position as the underarm recovers from the lymph node biopsy and the chest recovers from surgery.
The hospital physio rang me and offered some advice about the hip pain I get from sleeping on just one side. She seemed surprised that I was doing my physio exercises, even though I was told to start them the day after surgery. At this point I was able to lift my elbow to almost level with my shoulder. I have to do the exercises three to four times a day and the purpose is to restore full movement of shoulder/upper arm. The physio told me I cold start the second level of exercises.
Days 2-4 post-op
I wasn’t terribly surprised to feel worse on Day 2. I spent most of Day 2 in bed, dozing. On Day 3 I felt a little better but still spent a large part of the day in bed. On Day 4 I got up but felt a bit rough so went back to bed. One theory I had was that side effects from the post-op pain relief I was prescribed were contributing to how I was feeling so I scaled down the dose during during Day 4, without putting myself into pain. I continued to do my exercises and by the end of Day could move my elbow above the height of my shoulder.
My appetite hasn’t been great, so I’ve been eating what I want and am so grateful to Michael for cooking meals for everyone, in addition to doing shopping and visiting his mum.
I didn’t have the best of nights, but maybe I was paying the price for having spent so much time asleep during the day. During the night I had paracetamol instead of codeine for pain relief and had been fine, so I changed to paracetamol for pain relief. When I got up, I stayed up and felt fine. Mum had mentioned that it was hard for her not to be able to see me, so we had a Skype video call in the morning so she could she how I’m doing.
One of the things I was told to look out for post-op is “seroma”, which is a gathering of liquid that needs to be drained, but is different from lymphoedema, which is something very different. I was warned that if I had seroma it would be like a hot water bottle. I thought they meant would feel like water in a hot water bottle, but I have started “sloshing” when I move, just like water sounds in a hot water bottle so believe that I have seroma. Tomorrow, I will ring the nurses to arrange to have the seroma drained, which will be in clinic on Thursday.
Had a much-needed afternoon nap and Michael cooked a delicious evening meal.