Hair today ......... gone tomorrow!

My hair began to fall out about a week after my second chemo session. I brushed my hair and found a HUGE clump of hair in the brush. Even though I knew it was going to happen it still knocked me for six. I cried, it all seemed so truly unfair. Why is this happening to me. This thought does come and go through my brain at irregular intervals.

My response to the hair loss was that I stopped brushing my hair more than once a day, simply to reduce the speed at which I was losing it. I also stopped washing my hair as often. I knew that when it was washed a significant amount would fall out.

The realisation began to hit home, that I wasn’t going to be the lucky one who miraculously went through the Chemo process and managed NOT to lose my hair. I had been told about the Cold Cap technique used in some NHS hospitals to help minimise hair loss, however this isn’t available in the hospital I am attending.

I contacted a local hairdresser a friend had recommended who was experienced in cutting and styling wigs. Following a consultation with her we agreed that she would cut the wig shorter (if you remember from my previous blog post it was extremely long).  So Garth from Wayne's World was to be no more. Following this she would highlight it and then I would go back for a further appointment to have it styled and finished.

Letting go…..

Over the following week a dramatic change happened……large clumps of my hair fell out. Maybe I am in sync with the seasons, but as the trees were shedding their leaves, my hair was rapidly disappearing. My minimal brushing and washing of my hair was only delaying the inevitable.  I think I did this as I wasn’t ready to accept that my hair, a big part of who I see myself as was no longer going to be there. This was the part I struggled with most.  I don’t think of myself as a vain person, but as a woman your hair is part of how you see your femininity and I found it difficult to deal with this until I was forced to.

When the hairdresser contacted me to say that the wig was coloured and ready for a final cut and style I was sooo relieved. I would have hair again!!!!!! I had been wearing a multitude of baseball caps, beanie hats and woolly hats (all in fabulous colours) to disguise what was happening (thanks to all of you who have bought, knitted and crocheted hats for me).

The morning of the appointment I plucked up the courage and washed my hair, I remember being so overwhelmed with just how much hair was lying in the bottom of the bath. I called Craig up as I was feeling so emotional. 

After a HUGE HUG, he manfully wrestled the hair from the bath and disposed of it for me. I did not look good after the hair wash, in fact I looked horrific, so much worse than before. Much as I had lost a significant amount of hair, there still were long bits of hair all over my head but just very thinned out. I looked like an extreme Golem from Lord of the Rings…Not such a glamorous look let me tell you!!

At the hairdressers that afternoon I asked her to shave my head. It was so cathartic to have this done. She asked was I okay before she started, I think she was worried about me getting upset. I told her I was ready for it, all my crying about my hair was done and this was what I needed. I looked so much younger and so much better once this had happened.

She then put the wig on me so she could cut and style it. She did an amazing job. The colour and style is so much improved much less Garth from Wayne’s World blonde and more Holly Willloughby blonde!!

The hairdresser was so kind and thoughtful, without making me aware of it she had booked me into her final appointment of the day so the salon would be empty. I appreciated this so much as being bald for the first time in public is really unnerving, unsettling and just for me...... bloody weird.

So yes folks I now am bald, I look like the two year old version of myself (I had no hair aged 2 !!) I was born without any hair, nails, eyelashes or eyebrows…so obviously I am returning to this state! Eyelashes are much thinned out and eyebrows are thinning but holding on at the moment!! I’m not enjoying the cold weather as my head isn’t as insulated as it once was. I now have a greater appreciation for those of you that are follically challenged lol!

Me aged two!! As much hair as I have now lol!!

There are some positives to all of this hair loss…less time needed for getting ready, no bad hair days, saving money as no haircuts, colouring or waxing required, no need to shave your legs!! So always a silver lining!!!

Be Prepared...

Please accept my apologies in the blog post delay. I have not been feeling too well ☹

In the days following my second Chemo session I began to feel much less nauseated and as my appetite improved so did my energy levels. Three days after the treatment I was feeling relatively energetic and my husband and I went out for a drive that morning.

When we returned home I did feel tired so I decided to rest in bed for a few hours.  However, by 7pm I was feeling weird. I was so HOT. Craig came to check how I was and couldn’t figure out why I was so warm. We took my temperature as we had been advised to. It was 37.9c a little high so he opened the window to cool the room down, he covered me in cold flannels and replaced the duvet with a light sheet. 

Click on this link for information about importance of temperature monitoring

20 minutes later … NO difference, my temperature continued to increase to 38.3c. It was now 9pm on a Friday night.  He was very worried about me, I was quite delirious apparently. He made the call to the emergency Chemo line. They took all of the relevant details from him and advised that I be brought straight to A+E.

We had an emergency bag packed for just this occasion, so a quick check of it and we were off. On arrival at A+E Craig went in to register me with reception. It isn’t ideal to sit in a busy waiting room with lots of sick people when your immune system is already depleted.

Once registered I was escorted straight to a consultation room to be triaged; I had my blood pressure, heart rate and temperature checked and they took a brief medical history.

From here I was transferred straight into ‘Resus’. They had no single clinical room so there was nowhere to isolate me other than Resus.

There was one other patient there, however they were being transferred onto a ward, so we had resus to ourselves…for a while.

The nursing and medical staff were excellent. They took bloods and a urine sample to check for any signs of infection that could have caused my temperature spike. They started me on IV antibiotics and a saline drip as a precaution.

My temperature had lowered but they wanted to minimise the risk of an infection developing, I was so tired and drowsy. I slept intermittently.

My bloods came back ....normal, although I scored exceptionally high on my white blood cell count. As much as I wanted to get over 100% on a test for once in my life, I had to explain that I was actually cheating due to my white blood cell booster earlier in the week … darn it!!!

Over the next while my obs were taken and my temperature returned to normal.

We were given Tea, toast and Jam as it was late and the length of time we were there. Nice bonus!!

Whilst we were in resus, a 16 year old who had been found unconscious on the railway tracks (due to buying illegal drugs) was brought in by ambulance. Apparently the 2^nd time this week. To be shortly followed by his friend in the same situation. Both were abusive, difficult and borderline violent.  Not a pleasant experience and very eye opening for us both. But it does go to show what A & E staff have to cope with.

We had been there for about 5 hours when all of the test results came back normal…...The doctor said and I quote ‘you seem quite sensible so I think we will send you home’.  I think I will quote that on my CV in future lol!

The relief was amazing, it was our first wedding anniversary the next day so I didn’t want to be stuck in hospital… at 3am Craig drove me home. For the rest of that day I felt so tired…typically I bruised very badly from the cannula in my hand.

Our wedding anniversary was rather uneventful in the end, we were both exhausted. So it consisted of sofa surfing, eating and sleep. But at least we were together…

My Father's Perspective - Part Two

Realisation Strikes

We the Brigadiers (the nickname for the family team) had planned to go to Spain at the end of November together.  That has now been postponed.

That is when the realisation of the situation hit me, that the team was effected.   

How?

Yes I was aware to all the happenings but realisation is a different thing entirely.

My Damascus moment was with Easyjet staff.

I had been putting off cancelling our flights to Spain only because of a  lack of time issue but did it last Saturday morning.   Got my paperwork together, telephoned, pressed the numbers for the appropriate section for cancellations, held on for an assistant who was extremely helpful and who advised me they would repay the taxes and we would then reclaim the rest of the fare from insurance.  Grand.

Concern

‘May I ask why you are cancelling?’ she asked.

I told her of the family holiday and my daughter had to cancel because of breast cancer. ‘I’m so sorry to hear that’, she said and asked me to hold the line so she could speak to her supervisor. The music that morning playing in the period she was away happened to be ‘Are we human or are we dancer’.  Remember that one. What is the meaning of that song.  The bit where the lyrics are ‘And I’m on my knees looking for an answer’ hit so hard I started to break. On return the young lady apologised for keeping me waiting and advised me she had been given permission to give me a full refund by way of a voucher to be used at a later date. I thanked her and hung up.

At this stage I broke and the bits were everywhere.

Elizabeth handles life differently from me was on patrol and came to the rescue.  Later I regained my strength.

Click on this link for information and emotional support for cancer carers

Empathy and Care

The combination of that question asked in such a mild way, ‘May I ask why you are cancelling?’ the music , the helpfulness of another human being for my situation. I came away much stronger. Thank you so much Bronwyn you will never know what you did for me that morning. Well done Easyjet, extremely thoughtful.

The 16^th man

We have so much support out there for which I am so grateful. You know who you are and thank you for being. Not always in word or deed but in a look.

We have three things to help each other with. Words, Deed and Hugs.

But the greatest of these in our minds are Hugs.

 It is now 04.59 am.    Lorna will hopefully still be asleep. Though I doubt it.

By writing this I should feel so selfish.

I am feeling much better than I did at 03.34.

  

No I don’t mean it.  I’m not selfish. That is how I am coping.

I’m preparing myself so I can help Lorna and Craig.  I’ve a casserole to make.

Lorna likes that.  Craig’s not keen but will eat it.

  

But no spices with the chemo I’ve been told.

Good morning. 05.15am

My Father's Perspective - Part one

This is written by my dad it is unedited and as he sent it to me....interesting to get a fathers perspective. As I have said previously this process affects the whole family, this is part one of two parts.

Wednesday 13^th September 

When the Brain Defrags.

It’s four in the morning and once more the dawning,

Well actually it’s 03.34 and what am I doing sitting at my computer typing.

My daughter is going for her first session of chemo in a few hours time.

This all started for me the day after Elizabeth and I came back from visiting our old friend of 37 years, Hermann the German. We had known before going on holiday that Lorna was waiting the result of tests.  Hermann was first to pick up that something was not right when no communication was coming from the rest of the family. This lack of news is not normal.

Breaking News

We came home on the Thursday evening and Lorna and Craig came to see us on the Friday afternoon. Craig told us straight Lorna had breast cancer. A mastectomy was required along with the usual chemotherapy etc etc.

Four weeks tomorrow. Might as well be a year ago.

Understanding Strategy

A lot has happened since. We and I mean we our family, Lorna, Craig, Claire, Elizabeth and myself have attended meetings with the surgeon, oncologist, specialist nurses etc. to get a handle on all of this.  On the whole I’m managing to follow what is going on, and what I am uncertain about I discuss at the family team brief later.

But the feeling of running on the top of clouds is hard to understand, you daren’t stop, where will you fall through, where will you end up. 

It is regroup and ready for the next meeting.

I think of it as an extra mural class.

Ulster rugby team strategy and back to dugout.  It all helps.

Hospital staff, words cannot describe.  Lorna and Craig will tell you all about them.

Concern and Communications

Telling relations and friends?   What order?  Whose wedding anniversary or birthday do you mess up if the timing is wrong?  Whose holiday do I ruin?

Simple events create an issue.

Luckily for me some good friends were closeby.

Maybe that will be my addage in future. Keep relations close and your friends closer. As if another phrase needed to be coined.

Lorna and Craig were to be going on their delayed honeymoon shortly. Now postponed.

PART 2 TO FOLLOW VERY SOON

Chemo....Take 2

In preparation for the second Chemo session, Craig and I did a HUGE food shopping.  I'm not fit to venture far the weekend after treatment…and I want to minimise Craig’s running around, as this is also stressful for him. (Partners and family are also going through this).

Just a small shopping for two!!

The day before the Chemo session, (as is now  normal) I went to my GP surgery and had bloods taken in order to check my white blood cell count and platelet levels. These need to be closely monitored and maintained above a certain level otherwise treatment will be delayed.  All is good..

We attended our Chemo appointment at 9.10am. I had my blood pressure, heart rate and weight checked to determine dosage of the drugs.

We met the oncologist who asked me questions regarding the first session, she wanted to know if there had been any adverse reactions to it. 

I told her about the nausea and extreme sickness.

She decided to add an additional anti-sickness tablet (Aprep) into the combination I had taken the previous time (Ondansetron, Dexamethasone and Cyclizine). I was to start the Aprep 1 hour before the Chemo session that morning. She also advised me that my white blood cells were low and I would require a booster injection 24 hours after treatment.

Click on this link for information about white blood cell booster

She gave me a thorough boob check and asked my opinion on whether I had noticed any change in the lumps.  We agreed they did feel slightly softer. Less like a "dried pea".

We were to return at 12pm for the Chemo session, so we had time for a coffee and some people watching in the hectic canteen!! I took my new tablet (Aprep) at 11am.

We returned for the treatment….I was nervous I can’t deny. This was because of the distress of the previous session and also because I had reacted so badly to the Chemo drugs, I REALLY didn’t want it to happen again.

When we walked into the Chemo treatment room, I actually felt much calmer this time, my anxiety began to settle. I had a better understanding of the routine. We were automatically directed to sit at one of the treatment stations. My mum was staying with me during this session. I feel it is important that those involved get to see and then understand how the sessions work. It would also share the responsibility of looking after me.

The nurse was lovely, she came over and introduced herself. She chatted to us throughout the session, a great distraction (she does like her soaps). I think the chat is very important as it calms and reassures me.

As people have difficulty finding my veins, I wear leg warmers (courtesy of my sister) on my forearms and take a hot water bottle. We had been advised they might help in the search for my evasive veins by keeping my forearms warm!!  

Think ‘Flashdance’ but significantly less active lol!!

The nurse had a quick feel of my forearm and bang, she captured one of the sneaky veins. She inserted the cannula and then connected the IV bag.

She started introducing the six syringes. Less slowly this time compared to the first session, but constantly checking the veins were stable. I kept my leg warmers on whilst this was happening so no need for the heat pack this time. 

I was offered some lunch – soup and a sandwich and my mum was given tea and shortbread, all gratefully received. I continued to drink a jug of water throughout the process.

Click on this link for information about the importance of drinking water during Chemo

The whole session lasted about an hour. I then met up with Craig and Dad who had been eating coffee and cakes in the canteen.

I went home feeling good.

I took cyclizine early in the afternoon as I was paranoid about being sick again. I did start to feel nauseated and was sick once but I was very drowsy so fell asleep. I managed all night with no further episodes of sickness … HUGE relief.

The following day Craig drove me to the GP surgery to have the white blood cell booster injection. I felt awful, a combination of total exhaustion with an underlying current of nausea. I went straight to bed when we got back. My appetite was very poor, a few rice cakes, a slice of toast. I was trying to keep my fluids up and was drinking water regularly.

I didn’t need to take the anti-sickness combination of tablets for as many days this time (only 2 days). I was able to stop the Cyclizine earlier than I had the first session. PROGRESS BEING MADE.