What an Anti-Climax

Apologies for my absence over the past week I have been very unwell….more of that later!!

In the last post I discussed the Chemo education session. 

The following day we were at the hospital early to have an ECG and EEG to determine my heart function prior to starting chemo. Next, my blood pressure, heart rate, oxygen saturations, height and weight were checked.

Click on this link for more information on the above tests

This was to be the first session of Chemo. I was nervous about how I was going to feel after the treatment, I was also anxious to get the process started. We had come so far along the journey with assessment and planning but we needed action at this stage!

During the few days prior to this we had been focused on preparing for the treatment and its potential side effects. We had stocked the cupboards, cleaned the house top to bottom, tied up most of the loose ends and were ready to get going. 

We had also talked a lot about the week ahead, both Craig and I and also with my parents and sister. Part of this involved working out who would be with me over the days after Chemo, (Craig was on the night shift) almost like a babysitting schedule! 

I had all of the information from the Chemo education session rattling round my head. It’s more than just having the information, for me it was important to have processed this, to understand the sequence of the chemo appointment and also to prepare myself for any or all of the possible side effects. None of which are pleasant…..

I had an appointment for 10am. We waited in the waiting area …and waited…and people watched………..and waited some more. The clinic was so busy, a constant flow of people. What surprised Craig and I was the huge range in ages of people waiting. It is very true... Cancer does not discriminate. There was an elderly lady sitting opposite us, she appeared to be there alone. She must have been in her eighties, she was beautifully dressed, a gorgeous elegant coat, beautiful jewellery, gorgeous shoes and immaculate skin. She made me feel incredibly scruffy in my jeans and hoodie!

At 12.20pm we met the oncologist. I felt butterflies in my tummy as I went in to see her. I probably was hungry by this stage but this was a nervous butterfly!

She told us my bloods from the previous day were fine and all of the observations were fine to commence chemo…..great…….BUT……

…not today……….SERIOUSLY!!!!!!

It was too late at this stage to order the chemo drugs from pharmacy. I thought you have to be kidding me. I sat in shock for a moment taking this in. She apologised and said I would have to come back tomorrow to have the Chemo. In no way was this the fault of any of the staff, in fact they were really apologetic. It’s just the fact that the system is so busy.

However, honestly I didn’t really look at it this way at the time. I was so disappointed. Its a bit like when you are promised something and then it’s taken away. Now I know you will probably have read this and be thinking, why the drama Lorna? you were going to be seen the next day.

It’s simply the amount of unconscious and emotional preparation your body and mind go through in advance of this session. That is actually the most draining. Knowing I was to have to prepare myself all over again floored me.

This progressed into a feeling of anger, why was I the one at the clinic not to have my treatment. I had kept my side of the deal, I had attended early for my appointment and was FIT enough to receive the chemo. We had been waiting almost 3 hours to be told NO! It was so frustrating. I knew that becoming angry and frustrated weren’t helpful responses to what had happened, but I am human!! It’s difficult to be logical at times!!! I tried to avoid dwelling on the delay and tried to re focus on preparing again for what the next day would present!

Mentally drained, emotionally exhausted.... F***ING ANNOYED, I could go on..

It was to be three consecutive hospital days that week!!.......

Is that Marilyn Monroe?!!!!..............

Chemo education session

As I mentioned in the previous blog post, Craig and I were to attend the Chemo education the day before my treatment was due to start.

The education session was taken by a lovely nurse who was very tolerant of our rather inappropriate statements and sense of humour, and she gladly joined in, to be honest it made the process easier for us to handle, its a coping mechanism and it's us.

She explained the Chemotherapy drug regime; for me it is to be 3 sessions of a drug combination and then a further 3 sessions with an additional drug introduced. Each chemo session is to happen every three weeks.

Most of the potential side effects were highlighted; nausea, fatigue, temperature spikes, bruising, diarrhoea, constipation, tiredness, fuzzy memory, infection risk and hair loss…here’s hoping I don’t get them all…Lol!!

It was a very interactive experience. She welcomed our questions and queries and answered them all. It never felt as though we were being rushed or under any time constraints. Which is so important in this situation, as we had so many things we wanted to clarify and confirm.

She discussed the process of the Chemotherapy session. I will be seated in a special dentist’s style chair whilst the treatment occurs. We were warned about the number and size of syringes which will arrive in a tray from Pharmacy. It was highlighted as people have been overwhelmed by this in the past. Each syringe is delivered slowly through a cannula, to ensure no damage to the vein.

Click here for information about Chemo and its side effects

It was reassuring to know and understand more about the sequence and routine of Chemo. I think a lot of the anxiety and nerves I have been experiencing have been due to the unknown. All the advice was supported with handouts, leaflets and links for websites we could look up for further information at home. It was made very clear that they are there to support us and to call if we had any questions.

I obviously can’t name the nurse who led our Chemo education session, but I can’t praise her highly enough. We both left feeling more reassured and relaxed about what was to follow….

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Ten ears are better than two!

Sorry for another delay, still not feeling 100%.

We went to meet the Oncologist a week later, I felt rested and relaxed and without sounding too ‘airy fairy’ I felt revitalised following our mini-moon!!

Craig, my parents and my sister Claire came with me. I felt sorry for the Oncologist she seemed a bit overwhelmed as we all trooped in! I attempted to lighten the atmosphere by saying ‘we travel in packs’ but in fact what I said was ‘we hunt in packs’  Q.... eyes raised from the Oncologist….oops….!!

She took a history from me, asked me how I found the lump, the timeframe, my medical history and also any relevant family history. With the obligatory thorough boob groping that I have become accustomed to!

We all agreed it seemed logical changing the sequence to Chemotherapy initially then mastectomy to follow. It was decided I would commence Chemotherapy in 10 days time….

 They gave us a whistle stop tour of Chemotherapy treatment, briefly discussing side effects, drug regime’s, time frames. A lot of information was given to us in that appointment, hence 10 ears are better than two.

Craig and I were to attend a Chemotherapy education session the day before the process started. This was to give us a more thorough understanding of what the treatment involved (definitely very worth while, I urge you to attend should you need to).

It is surprising how exhausting driving up and down to the various appointments can be, and how draining all the waiting can be at appointments. However, Craig and I are experts at people watching and can often find our own entertainment…lots to see in hospitals…especially as a Physiotherapist. It’s incredible to see the number of people using crutches or walking sticks and carrying them like handbags….rant over lol!

I started back to work following the Oncology appointment. I had taken some annual leave in order to go away for a few days, but also just to rest in between all the various appointments. Getting back into work was great, the routine and structure gave me a feeling that I was actually able to be productive and useful!

Click on this link for more information about working during chemotherpay treatment

Ironically my Physiotherapy job is in a programme that works with people who are having difficulties staying in employment, this is due to their health condition, so I know the importance of being in work for your mental and physical health. My Manager was incredibly supportive of me returning to work. This was with the plan to try to work throughout my treatment with some tweaks to my responsibilities due to the risk of infection!!

Click on this link for information about infection risks related to work

Curve Ball

And so another drive to the hospital begins. This time Craig and my parents came with me. I've found the more ears who attend the appointments at this stage the better!! Often there is just so much information that I miss or forget some of the specifics. Another thing we have started to do is to write notes during the appointments, to help reduce the chance of missing anything.

We were meeting with the surgeon again.

At the last appointment we had been given a provisional surgery date which was in 10 days time. I think we attended the appointment with an action plan already formulated in our heads and were viewing the appointment as a confirmation process. “These are your test results, this is the surgery and you will have it on this date….” 

 

Not so quick Lorna….

  

Always a curve ball!! 

The good news was no secondary cancer anywhere, and no cancer in the bones. Fantastic to hear …. the relief is indescribable, almost like a pressure I wasn’t aware I was feeling had been lifted.

The surgeon then said that, yes I would need to have a mastectomy rather than a lumpectomy (this is to ensure they have a better chance of removing the affected area). This was actually okay to hear, that may sound odd, but I'd had time over the week between appointments to process the facts… I have breast cancer and need to have a breast removed....crap or stronger words!! I had cried, kicked inanimate objects, been really pissed off and angry questioning... why...? So when she said mastectomy I had already mentally accepted it was going to happen.

I want to survive this so it has to happen. No question.

She then tossed in the curve ball, “I want you to meet with the Oncologist to discuss the possibility of delaying surgery and having Chemotherapy first!!.....”

Again we all sat a bit shocked and unsure. Then they begin, that rapid procession of thoughts through my brain of ‘why would they want to change the plan, what might be wrong?’

She explained that new research (mainly coming from America) is starting to promote the improved benefits of Chemo first, followed by surgery second. The logic is that they will actually be able to see if the Chemo is being effective. The idea is the tumour will shrink in size if the treatment is working, whilst if the tumour has been removed first they won’t have anything to track its effectiveness. This will be an indicator of how effective it is on any stray little cancer cells that may be holidaying somewhere in the rest of my body!!

Click on this link for information about Chemotherapy before Surgery

We left the appointment a little shell shocked, again a totally different outcome than we had planned for, more for me to get my head around!!

Craig and I were going away for 4 days, straight after the appointment for our rescheduled honeymoon.  The drive to the hotel was strange, I think we were both trying to process what had been said.

I am so pleased we went away for that break, we rested, slept, walked, swam and ate. The car didn’t move once and it was the break that we needed.

Whilst making the booking we had explained to the hotel reception staff that we had to cancel our honeymoon because of my health and we were booking a break with them as a replacement and also as it was Craig’s birthday (not a big one…yet!!) 

The hotel staff were so kind, thoughtful and helpful. I can’t praise the Nuremore Hotel, County Monaghan enough, and just like The Terminator … we will be back!! 

 It wasn’t the honeymoon we had planned but it was exactly right for us at that point. Like all of our plans at the moment that amazing holiday is just on HOLD!!....

Radioactive !!

Firstly apologies for the lack of posts over the past week. Unfortunately I have been unwell for a few days. But normal service is now restored!!

I have previously talked about the dilemma I had regarding when to tell my parents my diagnosis. It was a very emotional time over those days running up to telling them, and for a few days after as we helped them get their heads around things. (Remember, we knew 2 weeks previously).

They have been such a great support since I told them. They have come to appointments with us, cooked for us and listened to me when I need to talk.  Please remember the importance of TALKING ABOUT THINGS, and the need for a good support network.

In order for the Doctors to formulate a treatment plan, they had arranged for me to go for a bone scan, which I mentioned in a previous post. 

My mum came with me to my radionuclide bone scan, (sounds scary eh!! But it’s an injection of a radioactive liquid called a radionuclide). This was to determine if the cancer had moved into the bones, also to establish a pre-treatment indicator of my bone health (it transpires that I have bone damage at my knees, too much walking!!)

Click on this link for information about radionuclide bone scans

At the appointment I was given an injection of the radionuclide.  It takes a couple of hours to work so I was sent away and asked to return in 2 hours. We went for a lovely lunch!

I returned for the scan, this involves lying on your back for about 40mins. The camera is positioned above your face, literally about 1cm above the tip of your nose!! It then really slowly starts to scan down the front of your body, it adjusts its position, (a bit like in a drive through car wash when the machine adjusts its height to avoid colliding with car). The same happens with the camera in this scan. Once it has scanned the front of your body it then moves under the bed you are lying on and scans the back of your body.

Fortunately unlike a car wash no foam or hot oil was involved in my scan!! As a parting bit of advice the radiographer informed me I would be radioactive for 24hours. I had to avoid contact with babies and pregnant women! I almost imagined I had that Ready Brek glow but I have been told I was just imagining it….or was I ??

The results of this scan alongside the other tests and scans changed the medical plan I was to receive at my next hospital appointment.