I didn’t post after last Friday’s chemo session because there really wasn’t anything to report except that two nurses tried to draw blood via my Port-a-Cath but failed completely and eventually they had to use a cannula in the back of my hand again. The odd thing is that saline and the chemo drugs go into the port normally, but nothing will come out! Apart from that it was just a routine session.
My volunteer reflexologist from The Fountain Centre
Colin accompanied me as usual, but left once the blood tests had been done and before my reflexology volunteer got going on my feet – he hates feet! I had our friend Elaine for company instead and so spent two hours nattering.
Colin drove over to Simon & Kate’s in Hither Green to collect our granddaughter Georgie who was staying with us for the weekend and then he returned with Georgie later to collect me once the session was over.
Despite all the chemo drugs so far, I am still relatively free of side-effects. I was a bit tired over the weekend, but most likely that was the result of having an almost four-year-old to look after!
On Sunday morning, while Colin was showering, I crossed the road to the grassy area opposite our house accompanied by Georgie and some bubble mixture. We both had a wonderful time chasing the bubbles… until I put my foot down a small hole and twisted my ankle.
I hobbled back home with Georgie (Colin was mad that I hadn’t taken my phone with me) and looked at the damage. My ankle was looking very swollen and sore and so we decided that Colin would drive me to the local Accident & Emergency Department and leave me there to wait while he drove Georgie back home as originally planned.
To cut a long story short, an X-ray showed a Weber fracture, type A (see Wikipedia article) the least serious classification, but still very painful. I have a “boot” to wear, not a plaster cast, for up to six weeks; hopefully though, once the bone begins to heal and the ligaments recover I will be able to walk, with some care, without its support.
More than anything, the real pain is that I was looking forward to meeting up with my friends Lindsay and Meriel in Chester this week, travelling there by train, so that trip had to be deferred.
A relaxing way to shop
Today we visited the British Red Cross locally to collect a wheelchair on loan. Colin has told me not to get used to being wheeled around but we plan to try and keep as active as possible in the circumstances.
The next chemo session is of course this Friday and I will only post if there’s anything significant to say following that.
If you’ve been reading Avril’s blog for a while you’ll know that the Herceptin she is receiving is just one of many Monoclonal Antibodies or MABs.
Below is a very interesting podcast with Professor Jim Al-Khalili (a renowned professor at the local University of Surrey, Guildford) interviewing Sir Gregory Winter, winner of the 2018 Nobel Prize for Chemistry.
He tells Jim very modestly the fascinating story of how he invented this new class of drugs – incredibly, the market for MABs, which includes Humira for rheumatoid arthritis and Herceptin for breast cancer, was worth US$70 billion in 2018 (and that’s a LOT of dollars!). The podcast is completely non-technical and very easy to listen to.
Many thanks to Jackie for drawing this podcast to our attention.
After Colin posted last Friday my elevated temperature quickly returned to normal and I felt fine again by late evening. The quick recovery indicated that it was not caused by an infection but by a reaction to either the Perjeta or Herceptin, neither of which I had been given before.
Today I had my delayed Taxol chemotherapy infusion. It all went satisfactorily and assuming I remain well enough and that my blood test results are not significantly different, the next session of Taxol will take place as planned this Friday, 22nd February.
To protect against a similar adverse reaction in three weeks’ time, I will be given an antihistamine dose before the Perjeta/Herceptin.
So for now my treatment plan continues to be on schedule.
Thanks as always for all your messages of encouragement!
Firstly, my apologies for the length of this post, there’s a lot to tell. I’m posting rather than Avril because I have had absolutely nothing to do today!
This week’s card from Amy (despite her being currently in the Cayman Islands)
Last week, Avril forgot to say that she was booked to have a heart scan on Monday 11th February. Very appropriate at the start of Valentine’s week.
On the advice of the Nuclear Medicine Department, she drove herself to BMI Mount Alvernia Hospital for the scan because she had been warned that she would remain radioactive for a while and should not be near other people for at least six hours afterwards. The injection of the radioactive dye, via a cannula, was started and true to form her vein collapsed and she immediately felt faint, almost passing out.
Thankfully, she rallied and the scan was successfully completed. Thankfully also, she didn’t get a parking ticket for overstaying 45 minutes in her parking place.
Quote: “…and remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others”
Despite not buying a Valentine’s Day card for me on 14th February, Avril’s scan has proved that unlike the Tin Man in the Wizard of Oz she does have a heart after all and fortunately the result of the test was completely normal. It will serve as a baseline during the next phase of treatment which can apparently affect the left ventricle of the heart, usually temporarily but occasionally permanently, hence the need for monitoring. She will have further scans every three to four months so her Consultant Oncologist can check how she’s being affected, if at all.
Generally Avril has not suffered any major side effects from the first cycle of the new regimen of Taxol chemotherapy; however last Sunday she felt very weary and listless and then made herself a bit depressed by reading in bed a few chapters of her book “The Complete Guide to Breast Cancer” which told her what awful things might be in store over the next few months.
She slept well that night and on Monday felt pretty much back to normal… except that she then found it difficult to sleep that night, so the pattern went all the way from needing to rest, to not being able to rest.
Tuesday in Guildford started with a frost but later turned into a lovely winter’s day; quite mild with a clear blue sky and sunshine. So between us we first cleaned the entire house and then blitzed the garden, trimming back all our shrubs and making it look a little like Hiroshima, 1945.
At 23:00, in the dark, we even managed to locate Avril’s lost FitBit at the bottom of one of the bags of garden refuse! We hope we didn’t disturb you Paul and Sarah…
On Wednesday, Avril went to a gentle exercise class at Spectrum Sports Centre and yesterday was a pretty busy day too, with “his and hers” dentist’s appointments and finally a delicious Valentine’s Day dinner thanks to the local Waitrose.
A VERY relaxing reflexology session
So Avril hasn’t exactly been relaxing, though she continues to pace herself carefully, following my sister Sue’s wise advice.
We knew that today would be long and tiring and as retirees it was very hard to wake up at 07:00 to the sound of the alarm clock. We arrived at BMI Mount Alvernia Hospital before 08:30 so this time there was plenty of parking space and no need to keep “feeding the meter”.
Our hectic day went like this, it’s simpler just to list what happened and it shows that there is never a dull moment in this journey:
08:30
Arrival
08:45
Insertion of a tube into Avril’s Port-a-Cath by Nurse Lily
08:45:30
Ouch! That really hurt!
08:46
Bullseye! Second time lucky
08:50
Why is saline going in but no blood will come out?
08:55
Staff Nurse Ashley comes to check and says not to worry, that often happens, it’ll sort itself out
09:00
There’s 250ml of saline going in and blood is being taken by syringe from a vein in the back of Avril’s hand
09:15
A delicious breakfast for us both
09:20
A visit from our friend Elaine who’s working upstairs
09:35
Two Paracetamol tablets are taken (Tylenol to my U.S. readers) because the next infusion may cause a headache
Visit by the Consultant Oncologist to confirm that the heart scan was normal and that the “super-bug” MRSA blood test last week was negative
11:45
Herceptin infusion commences. This first use is a “loading dose” of almost twice the normal strength
12:30
A delicious lunch
13:15
An hour's “rest” commences to check for any adverse reactions
14:15
Perjeta infusion commences which takes 90 minutes. This is another “loading dose”, double the normal strength
15:45
More saline and slightly more than an hour of observation
16:25
Avril’s suddenly feeling cold and her teeth start to chatter, despite the room heat being set to 27 Celsius (80 Fahrenheit)
16:40
Her temperature is taken and it’s 38 Celsius (100.4 Fahrenheit), so slightly elevated
16:50
The duty doctor arrives and after seeing Avril’s notes advises that this could be an effect of the Herceptin. More paracetamol is prescribed to lower her temperature and the Consultant Oncologist will make a decision shortly about whether the chemotherapy (Taxol) can go ahead
17:00
The Consultant’s decision is that, provided Avril feels she can cope, the chemotherapy can proceed. Avril says "Let's go for it"
17:10
The pre-meds are administered - Piriton and hydrocortisone
17:40
Avril’s temperature is taken again and it has risen to 39 Celsius (102.2 Fahrenheit). The chemotherapy needs to be abandoned as it would be unsafe to continue and of course more observation time is needed for her temperature to stabilise before we can go home
19:25
We set off home, 11 hours after our arrival but without completing the whole treatment. We will return for another try on Monday at 11:00
Avril is now feeling fine although her temperature is still a little elevated – but it’s going in the right direction.
One of us will post an update early next week, in the meantime have a good weekend!
Weekly chemo, so a weekly card from Amy? (no pressure!)
Today I had the first of twelve, weekly chemotherapy sessions using Taxol, a different “cocktail” to the first four, three-weekly sessions.
I was given a room with a bed this time instead of a reclining chair (the treatment rooms are allocated randomly) and that made things a bit congested – equipment and furniture everywhere! Margaret, my lovely Kenyan nurse who was with me for my very first session was back from an extended visit to her family in the Masai Mara and she will be with me every week from here onwards.
My Consultant Clinical Oncologist came to see me with the Breast Cancer Support Nurse and they talked me through:
the administration and potential side-effects of Taxol (paclitaxel);
the added monoclonal antibodies treatment, starting next week, alongside the Taxol;
the expected pathway for roughly the next 6 months of treatment.
Taxol (generic name Paclitaxel)
The Taxol treatment is milder than EC as it is administered more frequently but in smaller quantities. It requires different premeds and is an infusion lasting one hour, with the cold cap for only one hour following, instead of 1 1/2 hours.
I was advised to protect my toenails and fingernails with nail varnish as this chemo cocktail can lift the nail bed and it has been shown that dark nail varnish helps to block this. That shouldn’t be a problem!
Painted nails, as instructed.
The most common side effect of Taxol is a tingling feeling in the fingers and toes – peripheral neuropathy – I can cope with that.
The monoclonal antibodies rarely cause any side-effects, but they want to keep me under observation for six hours next week just to be sure. We will be going to the hospital to start at 08:30 next week. It’s going to be a long day!
A very cold head. Hot panini with ham and cheese helps!
Besides helping to minimise hair loss, I was told that the cold cap also protects new hair growth which is probably already coming through (it’s not very apparent yet, unfortunately!). So it’s still worth having it.
Instead of getting a take-away bag of medication, there is just one anti-nausea drug to take tonight and tomorrow. My white blood cell count has actually increased since last time, so Colin is disappointed because he was becoming an expert at giving me the Saturday injection!
Everything looks like it’s going to be a bit more protracted than we thought it would be at first, so our travel plans are still on hold.
My surgery will be scheduled about 4-6 weeks after the end of my chemotherapy so maybe it’ll happen around the last week of May. Hopefully that’ll still be a lumpectomy rather than a full mastectomy; they won’t know until they analyse the excised breast tissue to achieve a clear margin. Radiotherapy may be 4-6 weeks after that, probably every day for 4 weeks.
I’m staying positive with the good progress so far. With only a week to go to the next chemo session I’m hoping that I won’t suffer any side-effects and that it’ll be plain sailing for a while. I may not post on the blog every week unless there’s anything significant to report, so please assume all is well unless you hear otherwise.
As always your emails, calls and messages are very welcome and encouraging!
