Author: Colin

The publicity surrounding the 75th Anniversary of the Allied landings on the beaches of Normandy at dawn on 6th June 1944, always referred to as D-Day, got me wondering what the “D” stands for.

The simple answer is that the “D” stands for “Day”. That sounds a bit daft until you realise that the day before D-Day was D-1 and the day after was D+1 so today, 3rd June, is actually D-3. The date set for Avril’s lumpectomy procedure.

D-3 for Avril and me meant a very early start, but not nearly as early as it was for the troops in France all those years ago. We set the alarm for 06:00 so that we had plenty of time to get ready for our 07:30 arrival at Mount Alvernia Hospital.

The hospital room was lovely with a magnificent view over the Surrey Hills. The staff was very welcoming and we both felt relaxed and comfortable very quickly.

The morning was quite busy for Avril with lots of forms to complete and sign; many questions about her medical history; formal consent to the procedure proposed and, most importantly, what was her menu choice for dinner tonight?

Having donned her rather fetching hospital gown, compression socks and slippers she was taken down to the Nuclear Medicine Department. First, a radioactive isotope was injected into her breast and she then had a fifteen minute scan.

Back to the room and forty-five minutes later she went downstairs again and back into the scanner for another thirty minutes. This scan detected which lymph nodes the isotope had travelled to and localised the area of the sentinel node or nodes (the first few lymph nodes into which a tumour drains) so that they could be removed during surgery later in the day. An “X” marked the spot.

She returned again to the room and a short while later she was taken back down again, this time to the Imaging Department. A local anaesthetic was given and a thin stainless steel wire was inserted into her breast to mark the area where the tumour had been. Then a second wire was inserted near her armpit to mark the area of the lymph nodes.

Back in the room once again, she was visited by the Consultant Oncoplastic Breast and Skin Cancer Surgeon who used a magic marker to draw guide lines and yet more marks. Before doing so he put on surgical gloves because “he always gets ink on his hands”!

Finally, the Consultant Anaesthetist arrived to discuss what would happen before, during and after surgery.

Both Consultants gave us confidence. Any questions Avril? None at all.

At 15:50 Avril walked along to the Operating Theatre accompanied by the Theatre Nurse. Nothing more for me to do so I decided to go home to kill some time (and write the blog so far).

Time passes…

I went back to the hospital at 19:00 as promised and was somewhat alarmed upon entering Avril’s room to find that the bed had gone!  A few minutes later she was wheeled in from the recovery room and all was well.

I won’t add a photo tonight because she is a rather strange shade of blue as a result of the dye they put in!

After reviewing the latest scans the surgeon carried out a slightly different procedure to his original plan, involving less reconstructive work.  He removed three lymph nodes and upon analysis none showed any active cancer.  The breast tissue biopsy will take 7-10 days and he is hopeful that there will be sufficient margin; if not, further surgery may be needed.

The surgeon said he was very pleased with the way things had gone and asked her if she would like to go home tonight, but she preferred to stay… probably so she could have a night’s respite from my snoring. Also she had already ordered her favourite breakfast.

I will post again soon if there is anything significant to report in the short term. Otherwise the next stage will be the result of the biopsy.

Thanks as always for your many messages, emails etc., which Avril has really appreciated.

It’s been a busy time for us both and so there’s quite a lot to say – sorry!

After the chemotherapy session on Friday 1st March, Avril was due a further mammogram and an ultrasound scan the next week. On Thursday we went to Mount Alvernia Hospital at the crack of dawn (for us) for an 08:00 start.

By 08:45 we were on our way home again with the amazing news that the new scan looked exactly the same as the last routine mammogram she’d had in April 2016. Her tumour could not be seen at all and the chemo so far has worked incredibly well. Even her lymph nodes looked normal again.

Of course we’re not out of the woods just yet because that doesn’t necessarily mean there are no rogue cancer cells still lurking, just that they’re not visible; however you may recall that when the treatment started her tumour had a size of 41mm and it was clearly visible on the first scans so it’s very encouraging progress.

The chemotherapy and immunotherapy will still continue exactly as originally planned, followed by surgery. It’s fortunate that marker coils were inserted at the start of the treatment because otherwise the surgeon wouldn’t know where to start!

The day after the scans, Friday, we set our alarm again and were back at Mount Alvernia Hospital at 08:15. The second early start meant that not only did we get a parking space for the day but we also got a very nice breakfast!

It was another really long and tiring (for which read boring) day. Once again no blood samples could be extracted from the Port-a-Cath for the start-of-day tests so a cannula was used again. The blood results showed that her neutrophils level had dipped below the desirable minimum, which meant that her immune system was weaker than it should be. While the Consultant Clinical Oncologist agreed that the chemotherapy could still proceed it meant that, same as before, I had to administer a Saturday evening Lonquex injection in her lower stomach to help boost her white blood cells.

Since this was the day for another three-weekly infusion of the monoclonal antibodies (Herceptin and Perjeta), she was given additional pre-meds to avoid a repeat of the adverse reaction she had the first time – a significantly elevated body temperature. 

Fortunately, the whole day went smoothly apart from just a slightly elevated temperature. The now rather dull routine was relieved by a welcome series of visitors… Alan & Sheena, Valerie and finally Amy.

We eventually got home at 19:45 for a healthy measure of gin (for me) and a not-so-healthy pizza for us both. Twelve hours in total out of the house.

Over last weekend and for the first part of this week Avril has had a few more side-effects than before. She has been noticeably more tired and has suffered for several days with aches and pains in her muscles and bones. It appears that this could be the result of the Lonquex injection I gave her on Saturday evening to boost her neutrophils as muscle pain is listed as the number one side-effect of the drug. Also, she experienced similar issues before, although to a lesser extent. So she’s been uncomfortable at times but it’s something she’s been able to cope with using mild painkillers.

Apart from the foregoing, she’s also had an itchy rash which she’s tried very hard not to scratch (mostly successfully) and has also suffered a diarrhoea/constipation “yo-yo” which has been rather challenging at times! 

Today Avril saw her Consultant Surgical Oncologist to review the ultrasound scan and mammogram results from last week and he confirmed that he was very pleased with the excellent results. While cautioning that there could still be some cancerous cells present, he said that with such a dramatic reduction in the visible symptoms it was a reasonable assumption that there would be little or no active cancer remaining; and most importantly that also means the longer-term prognosis is pretty good too. 

He explained a bit more about the proposed surgery which will take place about 4 weeks after the end of the chemotherapy (so probably around the middle to end of May) and which in the light of the results would be a lumpectomy. He said a marker wire would first be inserted and then about 25g of breast tissue would be removed, with a margin of healthy cells. The removed tissue is likely to be fibrous dead cancer cells and samples will be analysed within a few days to check. If there’s not enough margin, it might be necessary to have a second procedure. 

During the initial breast surgery some lymph nodes will be removed at the same time. Unlike the breast tissue, the lymph nodes can be tested very quickly and the results will be available while Avril is still in the recovery area; so if necessary she will immediately be returned to the the Operating Theatre for more nodes to be removed.

The surgery should have a good cosmetic outcome and will most likely be treated as a “day case” or possibly overnight.  A month afterwards she will start radiotherapy treatment lasting three to four weeks.

Avril’s ankle is beginning to improve with the swelling looking much less pronounced, although it’s still painful at times. She attended the Fracture Clinic at our local Royal Surrey County Hospital on Monday and they were pleased with progress. Soon she will be able to wear a lightweight “stirrup” instead of the Darth Vader boot and, having been given the doctor’s blessing, this means that she will be able to drive again, which is a great relief.

The next chemotherapy session is just two days away, so unless there’s anything significant to report there won’t be another blog post for a couple of weeks. I sense your relief!

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.

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!

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.

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.

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
09:55	Saline infusion complete
10:40	Reflexology by a volunteer from The Fountain Centre http://www.fountaincentre.org
11:20	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!

It was quite daunting for Avril to go into her first chemotherapy session feeling perfectly healthy, knowing that in all probability she was going to feel very much under-the-weather afterwards.

We arrived early so that she could register in good time and feel settled and relaxed.  The chemotherapy suite was very comfortable and well-equipped for the patient – a reclining chair, TV, bathroom and a couple of chairs for visitors too.  A proper fresh-ground coffee machine just along the corridor.

The first problem was choosing what we were going to want for lunch – all served exactly when we wanted, to fit in with the treatment timetable.

Next, Nurse Margaret introduced herself and set about inserting a cannula into Avril’s arm (later she will have a more permanent Port-a-Cath to make things easier).  It was hot in the room, Avril was a bit stressed and became quiet.  Then she calmly announced that she was going to faint.  Oh dear.  The emergency alarm was pressed and ten medical staff ran in pushing two resuscitation carts.  I was quickly ushered outside the room, but after they elevated her feet and reclined her chair her blood pressure started to rise to a near-normal level. A very tense moment!

The cold cap was fitted next and the chiller started humming. Luckily her mind was taken off the increasing cold by a reflexology volunteer working on her feet!  The cooling took 30 minutes and then the pre-meds were administered and finally the chemo cocktails – bright red, one of them – were fed down the tube with saline.  The chemo itself only took about an hour but with the cool-down time before it and another 90 minutes’ cooling after the chemo finished we were there for about 6 1/2 hours in total.

Next appointment, three weeks away, always on a Friday. Now to see what side-effects she gets.

We were watching TV in the evening of Monday 29th October 2018 when Avril exclaimed “I’ve found a lump!”.  Immediately we both got an eerie, cold feeling and we thought that she must see a doctor urgently.

The next day she managed to get a General Practitioner appointment at 08:50 so there was not long to wait.  The GP said that she needed to be expertly checked and so referred her to a specialist Consultant Surgeon Oncologist at BMI Mount Alvernia Hospital in Guildford.

The first specialist appointment was on Tuesday 6th November 2018, so a week of waiting and worrying.  She was asked many questions about her medical history then she went along to the Imaging Department for a mammogram.  This showed what appeared to be cancerous tissue in her right breast.

A thin-needle biopsy was then performed to check what it was and a couple more appointments were fixed for an ultrasound-guided core-biopsy under local anaesthetic and a follow-up to discuss the results and the way forward.