Month: November 2018

I am very happy to report that I have been absolutely fine since I last posted, which was just after the first chemo session. I felt very thirsty and had a dry throat and a bit of a cough; however there is something going around so I don’t think this is due to the chemo – although you tend to question every little thing.

One downside of the chemo was a 2kg (5lbs) weight gain in one day! I am always watching my weight and I check it every day – so as Amy said, “they must have given me the ‘full fat’ chemo”! I’m planning to ask for the skinny version next time. Colin said it was undoubtedly the 2.5 litres of saline which they pumped into me.

The horrible indigestion over the first weekend has not re-occurred so I am assuming that smoked fish doesn’t agree with me currently and will not be eating smoked mackerel or smoked salmon, both of which I love.

I have not had nausea or even felt really tired. Colin was very happy that I was on steroids for the first few days as I had a burst of energy on the Sunday and cleaned the house! Unfortunately on Monday no steroids, so I felt a bit pathetic although we still managed to visit IKEA – for once I didn’t come out with a trolley full of things I didn’t know I needed. So “every cloud…” as they say.

I was up in the night a lot to start with but was able to get back to sleep easily. I’ve only had one night where I sat up at 04:00 and read for a few hours. Insomnia is a common side-effect apparently. I am having to get up less and less in the night now and am sleeping better than I have for a while. So all is good. I have even lost the 5lbs plus two more, so I’m very happy about that.

I had another marker coil inserted in my lymph nodes last Thursday and next Monday is the Port-a-Cath insertion under sedation, so I’m not looking forward to that very much; however once that is done it is simply a 3-week cycle of chemo until February 2019 when it changes to weekly half-doses of a different concoction of drugs. I’m not sure what the side effects of those may be.

I will post another update just before my next chemo session on 7 December, hopefully as positive as this one. Thank you everyone for your lovely emails, text messages and phone calls, I feel so fortunate to have such an amazing band of supporters.

We had a lovely weekend after the first chemo session, including dinner out on Saturday. Yesterday I had a bit of indigestion which has come back again today but apart from that I am still feeling pretty normal.

At the moment.

I came home from hospital with three sets of anti-nausea drugs which I have been taking exactly as instructed so I don’t know whether I would have had a problem if I’d not been taking them.

Colin seemed to enjoy sticking a needle into my tummy 24 hours after the chemo finished (it contained something to boost my white blood cells).  Actually he said it all seemed like a bit of a joke until he actually had to do it!

It would be very unusual not to get side effects and so I’m bracing myself to face the worst later on.

We are so thankful that we carried on paying for private medical insurance after Colin stopped work in February 2011; it has meant that I could start my treatment just 16 days after my GP referral.  We love the NHS and our system of universal healthcare is preferable by far to what people experience in many other countries, but sadly these are the latest statistics from our local hospital:

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.

As forecast, it has indeed been a busy week.

Monday’s PET scan was pretty easy.  Firstly a radioactive marker dye was injected, then I had to wait an hour for it to spread throughout my body before going into the scanner which took about 40 minutes.  The purpose was to highlight anywhere else the cancer might have spread.

The most difficult thing was to heed their advice not to be any closer than 2 metres to anybody for at least six hours, since I remained radioactive for that time!

Tuesday’s Pre-Assessment involved a vast number of questions to answer.  Then we were introduced to my dedicated Cancer Support Nurse and were shown around the St Martha’s Oncology Unit.  I asked if I could see what a “cold cap” looked like (it will perhaps save some of my hair).  Not nearly as scary as I had thought, it was actually similar to a jockey’s helmet, only colder!

On Wednesday afternoon I had an appointment at a local hairdressers to choose and be measured for a wig.  They were surprisingly real-looking and after an at-times amusing session I finally chose one that looks very much like my own hair and style.  They will keep all the information and if/when I need it they can order it quickly.

This afternoon the marker coil was inserted under local anaesthetic with ultrasound guidance and then we waited a short time to see the Consultant Clinical Oncologist.

I was reassured to learn that the PET scan indicated no spread of the cancer, although there was some “low-level activity” in my lymph nodes which indicates that it has spread that far (the lymphatic system is there to filter out harmful things, so in fact the nodes have done their job).  The consultant said that as a matter of routine they would invariably remove one or more nodes at surgery time and that the proposed chemotherapy regimen would deal with it anyway.

The full biopsy results show that I have a HER2-positive cancer.  Treatments that specifically target HER2 (such as Herceptin) are very effective; in fact they are so effective that the prognosis for HER2-positive breast cancer is actually quite good.  Let’s hope so!

So, I am to have the following treatment before surgery:

• Four sessions at three-weekly intervals of ET:  Epirubicin and Cyclophosphamide
• After another three weeks, twelve sessions at weekly intervals of Taxol
• One week into the twelve sessions I will also be given Trastuzumab (Herceptin) which is an antibody treatment using Monoclonal Antibodies (MABs).  This three-weekly treatment will continue for a long time after the surgery, for a whole year in total.

It is very disappointing for me that the MAB treatment won’t finish until the middle of February 2020 but that is how it has to be, unfortunately, our lives really are on hold.

I went to see the specialist again today, 9th November 2018, and he told me that the thin-needle biopsy and the provisional results of the ultrasound-guided core biopsy confirmed his initial diagnosis:  I have a fast-growing cancer in my right breast with an approximate size of 41mm.  Although I check regularly he said that the soft texture of the tumour and the speed of its growth would undoubtedly explain why I hadn’t noticed it earlier.  A slow-growing cancer typically doubles its cell count in about 6 months while a fast growing one would see the same growth in 30 days.

He gave me a simplified explanation of the complex biological systems that underlie the development of the various types of breast cancer and the treatments which might be appropriate for each.  He felt that the most likely pathway would be for me to have a course of chemotherapy at two- or maybe three-weekly intervals over a period of 5 months.  That would be expected to shrink the tumour to a size where lumpectomy surgery would be sufficient rather than a far more invasive mastectomy and reconstruction.

Unfortunately the chemotherapy is likely to give me same the side effects that most people suffer:  The full list of possibilities covers six sides of A4 paper, but the most disturbing for me is the probable temporary loss of my hair.

Next week is going to be busy:

Monday	PET scan (to check whether the cancer has spread to the lymph nodes, or maybe further)
Tuesday	Pre-assessment and tour of the St Martha's Oncology Department
Wednesday	Wig consultation
Thursday	Appointment with a Consultant Clinical Oncologist, when I should find out the full biopsy results and get confirmation of the exact course of treatment. Also, the insertion of a marker coil (the location of the shrunken tumour will otherwise be hard to see when I am ready for surgery)
Friday	First chemotherapy session

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.