Author: Avril

From time to time I felt a little tired over the Christmas period but I can’t necessarily blame that on the chemotherapy. After all, we were catering for eleven people, although with a lot of much-appreciated help and support from our guests.

Once again, the only real side-effect I have suffered since the last chemo session has been some occasional indigestion. Or maybe I ate too much Christmas pudding!

I think I have been incredibly lucky so far; even my hair loss seems to have slowed down a bit. I only wear my wig or perhaps one of my trendy hats on important outings. Around the house I still have enough (thin) hair to get by.

Today I had my third chemo session which was uneventful apart from the discovery of a stray suture following the insertion of the Port-a-Cath (it should have been dissolvable, but it wasn’t).

While chatting to my nurse, Lily, I asked how long her shift was and was shocked to find out that they all have to work 12 hour shifts with just 30 minutes’ break. They all work so hard and are so dedicated.

I decided to have the “cold cap” treatment again to try and save my remaining hair.

Just before the treatment started I was visited by my Consultant Clinical Oncologist who examined me and said I am doing very well, which was encouraging.

Everything took rather longer to finish this time because many of the medical staff were still away enjoying their Christmas break; however, we were home by 17:00, a total of 7 1/2 hours.

If my hair should go much beyond its current sad state, not bothering with the “cold cap” for future sessions would save several hours each time.

Next Friday, 4th January I am due to have a further ultrasound-guided mammogram and then on Monday 7th a follow-up review with the Consultant Surgical Oncologist. I will post again after that.

Thank you, as always, for all your moral and practical support. Have a great New Year’s celebration!

Why did I worry so much about the Port-a-Cath? Well, perhaps it could have been the idea of having a big chunk of metal under my skin which was to be pierced by a needle; but actually it was for nothing that I had a troubled night before last Friday’s second chemo session.

My lovely nurse Ashley carefully removed the dressing and popped the needle through my skin and into the Port-a-Cath device and it didn’t hurt a bit. I suppose they had to tell me the worst scenario as some people might experience pain or discomfort.

I had to wait for my blood test results before they could start. They all came back good and the procedure started as before – pre-meds and the cold cap for 30 minutes then the chemo, which took just 45 minutes to administer, then finally another 90 minutes of cold cap. We were finished at 15:35, an hour earlier than last time.

I felt fine afterwards, a few odd twinges around the Port-a-Cath, which has a dressing on for 48 hours, but that’s hardly surprising I suppose.

Ashley, my chemo nurse, suggested I should get a bottle which makes sure you drink enough water throughout the day. It’s very handy as I have to drink two to three litres which is a LOT for somebody of my diminutive size.  Very useful for everybody maybe? Here is the Amazon link to the water bottle.

The next day, Saturday, we went to visit Simon, Kate and our granddaughter Georgie in Hither Green, near Lewisham and Lizzie (Grannie) was there too. We had a lovely lunch and afternoon, but I felt really tired on the way home as I’d had interrupted sleep the night before.

Colin has perfected giving me the injection on the first post-chemo day to help my immunity by boosting white blood cells; this time it was totally painless and there was no blood or bruising.  Skillz!

Unfortunately after we got back home on Saturday I had the same horrible indigestion that I had the last time, but now I have more magic pills and have been fine since.

On Sunday I woke up full of energy. The steroids had kicked in and so we had a busy day with our friends Suz and James and their boys here for a Sunday roast dinner which was lovely.  Well that’s how it was for me, but Colin was exhausted by my boundless energy and was constantly saying “chill”.

The house was tidy and clean by midday, all my cupboards were organised and the dessert was beaten to within an inch of its life.

The washing-up was a somewhat damp affair I now hear – I had no idea Colin was taking photos as evidence.

Today, Monday 10th December, I decided that my hair has definitely decided to give up the ghost.  Lots of fallout, so I went back to our local wig specialists and left there with a wig which I think gives me an appearance very similar to “normal”.

As I said before, the upside of my hair loss is not having to endure the cold cap during chemo.  Sadly, that’s the only upside I can see at the moment.  Well, apart from not having to worry about my hair when I’m going out – I’ll just “whack on the wig”.

Now, the appointment with my Consultant today.  I’ll summarise quickly:

Nothing can be certain, but he is pretty sure that the treatment trajectory, as he calls it, will be very effective. I am “triple positive” meaning that my cancer is oestrogen-positive; androgen-receptor-positive; progesterone-receptor-negative; and HER2-receptor-positive.  The worst diagnosis would have been “triple negative” – had the cancer been of this type it could have meant that there was a genetic element rather than it being a random cell mutation. Very reassuring for me, not to say also Carrie and Amy.

The plan going forward is much as before.  Chemo sessions to continue.  Two more at three-weekly intervals, a check by mammogram and ultrasound in early January, then assuming the tumour is shrinking as expected (a change of “cocktail” if it isn’t) chemotherapy weekly for twelve more weeks including monoclonal antibody therapy (“MAB”) using Herceptin, which will probably go on for a full twelve months.

All-in-all I’m still feeling positive; continuing to feel pretty good with surprisingly few side-effects so far.

We are driving to Scotland tomorrow, until Sunday.

Feeling good about Christmas and the New Year too.

Thanks again for all your positive calls, emails and messages.  I’ll post again if anything changes but for now all is well. Next chemo session is on 28th December.

Happy Christmas and a healthy and happy 2019 to all xx

I am feeling rather sad as I found quite a lot of hair in my hairbrush yesterday afternoon; I was hoping the cold cap had worked and maybe it has delayed or will reduce my hair loss, so I plan to continue with that during the next chemotherapy session tomorrow and will hope for the best.

Apart from that I have been feeling fine since my last post; however, Amy and I did spend five hours in the local Accident & Emergency Department last Friday night as I was concerned about my left eye. A few weeks ago I had a big black “floater” appear which was checked out by an optician who said my eye was healthy and my brain would adjust to the floater, so I would hardly notice it – which has happened. 

This may sound familiar to some of you who I know have had similar experiences, but then I started getting flashes of light and then it felt as if I had something physically in my eye so we went to get it checked out.  To cut a long story short, I was given antibiotic ointment and an appointment at the eye clinic at Royal Surrey County Hospital, which was yesterday.  The doctor said it was “posterior vitreous detachment”, not a detached retina and nothing to worry about, but to blink as much as possible to lubricate my eyes as chemotherapy dries them out. I often have dry eyes anyway and have drops and ointment which I will continue to use regularly. 

Carrie arrived from Chicago last Saturday and we have had a lovely time meeting up with friends and family. Carrie was with me for the Port-a-Cath insertion on Monday, which went fine (Colin was briefly in Cyprus closing down our villa for the winter). I was lightly sedated because the radiologist said he would be using a local anaesthetic so I wouldn’t feel anything. I was awake while he chatted to the nurse during the procedure which took about an hour including recovery time. The most painful bit was inserting the cannula into the back of my hand to put in the sedative. I could feel pressing and him rummaging about in my chest, but no pain. 

The doctor had explained the insertion procedure but did not say anything about how I would feel afterwards and once the anaesthetic had worn off in the evening I was in a lot of discomfort.  My throat, neck and chest hurt but once I went to bed and lay on my back it all felt much better. Getting out of bed was painful but over the last few days it has got better and I am looking forward to the dressing being removed so I can see what it looks like. 

I received a very informative letter from my consultant yesterday explaining all my results and saying he would discuss my future treatment with me on Monday 10th December at our meeting.  So I will post next after that meeting. 

Colin says there are now fifty of you following my blog which is just amazing. Thank you all for your continued support. 

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:

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