Maggie's

See what's happening in the Community

You are not logged in.   Log In

Blogs

What is a blog?

A blog is an online journal. Read other member's blogs or start one of your own and share your thoughts.

Find A Blog

Read our blogs and post your own comments

Meet the team

As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

Personal Blog

Selected Blog

...no, I'm a Gemini

by Anonymous

23 November 2016 at 09:29

23 November 2016

So halfway through another week, counting down my radiotherapy days, 7 sessions down 8 more to go. I had a nightmare trying to get to my 12.00 appointment yesterday, all the hospital car parks were full and had long, long queues, after waiting over 35 minutes I gave up and went into work instead, I called the hospital and was able to reschedule my appointment to 6.40pm instead, at least it meant I was able to actually get parked at that time of night.

I have been getting some mild side effects from the radiotherapy; my left side is now slightly redder than the rest of me and it always feels rather warm. I have also been getting strange twinges across my chest, just above my scar, a bit like little electric shocks, they only last a second but they can be quite painful, the electric shocks only really started yesterday afternoon, I get a few of them, then they seem to die down again. I had two or three spasms so far yesterday.

I mentioned it to the nurses when I was having my radiotherapy and they said it was normal and had something to do with the nerve endings around my scar reacting to the radiotherapy, I am hoping my nerve endings get over it sooner rather than later.

I am not sure if it has anything to do with the radiotherapy or its just been a busier week than normal, but, by around 7-8pm I am pretty much done in and most evenings I am tucked up in bed around 8.30/9pmish. On the plus side, I am sleeping like a log.

I was back in for my 3 weekly herceptin injection on Monday, (I really, really hate those injections, a. Its an injection, b. they tend to really sting and c. they take forever (OK, so thats a bit of an exaggeration, maybe 2-3 minutes, but it seems like forever at the time)), I had some time to kill between my radiotherapy in the morning and injection in the afternoon on Monday. So I wandered over to Maggie’s.

I was in lucky again this week as Jenny, who does the treatments had a free ½hour slot. This time I opted for an Indian head massage, I have never had one before and my word what a wonderful experience it was. It was incredibly relaxing and by the end of the session I just wanted to curl up and go to sleep right there. If you have never had one, I would definitely recommend giving it a go.

I also got chatting to someone at the center who was just starting her treatment, she was asking me about hair loss, she had only recently started her treatment so she still had all her hair but, like me, she had been told it would fall out. The funny thing was, she was also worried about the shape of her head, just like I was initially, I thought that was just me being odd, but seems it could be a pretty common theme after all.

Its surprising, talking to someone in the early stages of their treatment and how you relate to their concerns and questions, pretty much all the things she wanted to know more about, or had concerns about were exactly the same as I had way back then, although at the time you feel alone and vulnerable, you are not, take comfort in the fact there are plenty of us out there who have shared the same experience and in lots of cases are more than happy to share our own personal perspective on the rubbish and not so rubbish aspects.

Whilst I am more than happy to share my experiences with anyone, its difficult sometimes to know what to say to people, or how to say it, I just decided to be open and honest about how things were for me, but as the process is so different for everyone and some people are a lot more attached to their hair than perhaps I was, I also felt it was important to bear that in mind at the same time.

It felt a little odd being on the other side too. I remember, how things were for me at the beginning, you feel overwhelmed with information at a time when your head is still just trying to take in the fact you actually have the killer pox. You want someone to help you to work out what is the really, really important stuff, what is the nice to know stuff and what is the stuff you will probably never need but you have to be told about. Instead what you get feels like everything thrown at you all at once.

You just want someone to turn to really, its like you have suddenly been thrown overboard and you are desperately looking around for something to hold on to. In some ways the sooner you find that thing to hold on to, the easier and calmer things become.

It also makes you realise just how far you have come, so as it turns out, chatting to this stranger, in a strange way felt like a really positive things for me, it didnt feel like having to relive the whole experience at all and it was more than just trying to help someone, it just felt like a really empathetic moment.

I have been trying to get to the office as much as my appointments will allow this week, unfortunately my appointment today is not until late afternoon, which means I wont be able to make it to the office.

Its a bit annoying really, as part of your radiotherapy planning, you are asked which times are most suitable and whilst I get not everyone’s wishes can be catered for it doesnt always make things easy when you are trying to juggle work and treatment. I am fortunate, where I work everyone is incredibly understanding, so I am free to come and go as I am able to, but it must make life quite difficult for people who perhaps dont have the same flexibility.

As I wont be working, I am doing good deeds today instead, I have a friend who sadly, is losing her sight and is not able to get out and about on her own as much anymore.

During my treatment she had been told there really wasnt anything they could do for her and things would gradually just deteriorate, unfortunately they seem to be doing just that rather quickly.

Although my own ‘being stuck indoors’ was only temporary, I remember what it was like and what a tonic just going out for a short while was, so this morning I am dragging her around the market with me.

Fortunately she is not completely housebound, her husband and family are always happy to take her anywhere she needs to go, but I dont think that always stretches to wandering around the market without any real purpose, just because, so hopefully it will stay dry and bright and thats exactly what we will do today.

For some reason that film ‘see no evil, hear no evil has just popped into my head.
https://www.youtube.com/watch?v=HGo4mPa_bWc



Registered Office: Maggie's, The Stables, Western General Hospital, Crewe Road, Edinburgh EH4 2XU   Registered Charity Number: SC024414
The Maggie Keswick Jencks Cancer Caring Centres Trust is a company limited by guarantee   Company Number: SC162451