Emotional Turmoil…….for what reason????

Once I had returned to work I began to focus on the fact that my Dad’s 70^th birthday party was the following week.

He had decided not to have the HUGE party he had originally planned. He didn’t feel it would be safe for me to be in such an environment with lots of people, due to the increased risk of exposure to infection. I had strongly disagreed with this decision and was very vocal about it…..I felt horrendously guilty that he was not having the big party he wanted, simply because of me.

He said that he wanted me to be at his celebration so his choice was to keep it a small event.

During the week before the party I began to get nervous and a little anxious. I was going to be meeting members of our family and close friends of my parents for the first time since my diagnosis and the start of my treatment. 

How would people treat me? Would they feel awkward? Would this make me feel awkward? Would people be overly sympathetic? (‘poor Lorna’) Would I be too tired to attend given the fact that my average bedtime of late is 9pm?

There is nothing worse than an awkward conversation where the other person really doesn’t know what to say and it’s obvious they really don’t want to be there. I didn’t want this to be the case.

I appreciate everyone’s best wishes, kindness and positive encouragement through this experience and it all really does help I promise. However, what doesn’t help are the overly sympathetic ‘poor Lorna comments’ I was anxious that if people at the party spoke to me like this I would probably burst into tears. Not a good look!! This all added to my anxiety about the whole evening.

In addition to my anxiety about people thoughts, a combination of steroids and a much more sedentary lifestyle of late, I had put on weight which meant I had nothing suitable to wear. I had to go clothes shopping for the first time in months.

I have never noticed how hot changing rooms are. This time, wearing my hat to disguise my bald head I was overheating badly!! But fortunately I found a suitable top to go with a pair of trousers I had (which I could still squeeze into) and voila, ….vaguely presentable!

I was aware of the fact I would be wearing my wig, I was unsure if I would feel uncomfortable in it knowing that everyone would know it wasn’t my hair. My eyelashes and eyebrows were really starting to fall out. I was very aware that the 3 or 4 remaining eyelashes on each eye did look quite ridiculous with my attempt to use mascara on them. At least I was able to draw in my now patchy eyebrows to make them slightly more acceptable!

I know this all sounds so self-centred, it wasn’t my party, it was my dad’s but these were some of my thoughts at the time. As I have commented previously, as a woman your hair and make-up are such a big part of your femininity, and when this is taken away from you it’s incredible how vulnerable and unattractive you feel. This in turn has a dramatic and negative effect on your self-confidence and self-esteem.

Click oh this link for information about 'Look Good Feel Better' a UK wide support programme providing free skincare and make up workshops for women with a cancer diagnosis

I was to have my fifth chemo session three days after Dad’s party, it was important that I wasn’t overtired by the event and also that I kept infection free as Chemo would be delayed if I was unwell.

So many things running around my head but at the centre of it was the fact that I wanted desperately to spend time with my Dad on his 70^th birthday.

The party turned out to be an amazing evening. Everyone was in such good form and not once did I feel uncomfortable or awkward. I hope everyone I spoke to felt comfortable too??  I forgot about the fact I was wearing a very glamorous blonde, curly wig and enjoyed all the fun and catching up with everyone. Everyone was really open with me and interested to hear how I was getting on. 

There was no gently, gently don’t mention the ‘C’ word. Phew!!

I along with Craig, my stepdaughter India and her Partner Joel, my parents and my sister Claire were the last to go home, after 1am. (Dad a little unsteady on his feet, thanks to the Grapes I hasten to add). I’m a big girl now staying up past 9pm!

The most important thing was that my Dad had a fabulous evening and a 70^th birthday to remember, and I was able to be part of it.

Normality as much as possible is the key… embrace all that comes my way and employ coping mechanisms accordingly.

Painful steps

The two days immediately following my chemo session were actually very good. The three days of steroids I took before and after my chemo gave me a false energy burst, I felt like I could take on the world.

The downside of this was my sleeping pattern was extremely disturbed and I was constantly hungry... I was finding that I was wakening at 3am and making tea and toast to settle my hunger. It didn’t get to the stage of McDonalds at 3am but nearly! More frustrating was the difficulty I had getting to sleep.

However, by the third day post chemo this all changed significantly. 

My energy levels nose-dived.

I have never experienced fatigue like it. It’s difficult to explain how debilitated I felt.  I was so exhausted…all I could do was go to bed and get what sleep I could. However even with a long sleep I didn’t feel rested or re-energised. 

Click on this link for information on fatigue

In addition to the fatigue I began to experience joint pains in my ankles, they felt like a crushing pain. As though my feet and ankles had been run over by a car…nice eh!

Craig had to regularly massage my ankles and the balls of my feet to provide some relief, I also took some co-codamol to help me get to sleep as the joint pains were keeping me awake and I was desperate for sleep.

After several nights of bad sleep I finally managed to sleep from about 8pm until 10am. However, I still felt an underlying tiredness.

Simple things you normally don’t even think about needed more time and preparation. Even having a shower felt draining. Rather than energising and I needed time after it to rest before I could even think about getting dressed.

The major issue I had with this was accepting how frustrating it is.

I know that I should be able to do simple things like make dinner or have a shower without having to rest. These activities shouldn’t have needed me to think about them, they should just happen as a minor part of my day. Instead, having a shower or walking up the stairs were major events in my day. I have found that sitting down intermittently when waiting for the kettle to boil helps conserve some of my energy. By planning and allocating sufficient time to rest between getting showered and dressed means I can avoid becoming exhausted too quickly.

I found that I needed to accept that the days following chemo my energy levels will be really poor, and that I will need to ask for help and have rests to manage the tiredness.

The asking for help I still struggle with….Luckily my family know what I am like and were great about offering assistance which made it somewhat easier for me to accept.

In case you’re experiencing similar symptoms as you are reading this, there were a number of additional factors that helped me manage the fatigue and lethargy.  I found a combination of rest, sleep, regular meals, fluid and pacing activities. I made sure I still had some fun every day – this acted as a distraction for me and also boosted my mood.

Fortunately after the joint pains and exhaustion began to subside I started to pick up. It wasn’t a case of springing back to normal. It was a day by day gradual improvement. The joint pains finally began to settle and I began to feel less fatigued. I gradually started back to work, a little at first and built this up by small amounts each day.

Small steps.

Change of Chemo drugs

The fourth chemo session meant that the drug regime was changing, I initially had 3 sessions of the FEC combination. This now stopped and I was to have Docetaxel instead (Clinical research indicates this is the most effective treatment protocol).

Click on this link for information on how FEC-D works

I attended  my chemo session with my sister for company. We were seen initially by the Oncologist who checked my blood test results (taken the previous day at my GP surgery). She was happy with my bloods so chemo would go ahead. She asked if I had taken my steroids (dexamethasone) the previous day and before attending today. I confirmed I had, this is very important as they would not commence the new chemo regime if I had missed the steroids due to the high risk of allergic reactions to the Docetaxel.

She advised me of the potential side effects of Docetaxel…..very different to the previous combination. These include joint pains ranging from flu like symptoms to feeling like you have been hit by a bus, numbness and sensation loss in hands and feet, significant fatigue, finger and toe nail deterioration and possible loss. Sounds fab doesn’t it!

Click on this link for information on side effects commonly with Docetaxel

I was asked to return in an hour whilst the chemo drugs were made up in Pharmacy. Claire and I used our time wisely and went to the canteen for breakfast, coffee and people watching.

The chemo unit were incredibly busy when we came back and they  asked us to wait another half hour. When we returned at 12pm we allocated a chair and the process began.

The nurse found a suitable vein (after several attempts, due to my bad veins) and a cannulae was inserted, an injection of anti-sickness medication and steroid was introduced through the cannulae. An IV bag was attached, this contained the Docetaxel , it was then covered with a silver/grey bag to prevent the light from affecting the contents as the drug is light sensitive.

Click on this link for information about how Docetaxel is delivered to the patient

The IV was slowly run through in about one hour. During this time the nursing staff were regularly checking the cannulae for any negative reaction at the vein and checking how I was feeling in case of any allergic reaction.

Once complete and the cannulae removed I was allowed to go home.

Claire drove me home. I felt good, no sickness and I was able to have my tea that evening and watch some TV.  A first for a chemo day!! A real treat.

And then the pains started....

Happy new year!!

Happy new year to you all.

I have taken the past few weeks to rest, eat, sleep, go for gentle walks and spend quality time with family and friends. But mainly just having as normal a few weeks as possible!!

Spirits have been good, energy levels have been good and I have had no health issues.

Craig and I stayed with my parents for 3 days over Christmas, it was lovely being waited on hand and foot and fed far too well and too much….

I had chemo session last week and the drugs have now changed so very different side effects. More to follow.