From ‘No Way’ to ‘Namaste’

Written by a friend and fellow Christie’s patient. This blog will be incredibly useful to myself and other patients.

RE-Active living

Hi!

So, I went to my first Yoga class today and in keeping with the energy I must have sucked from the universe, I decided to start a blog about my recovery.  Now, going to a Yoga class might be nothing for the seasoned gym bunnies (although have you tried a flying pigeon?), for me, it’s actually a huge milestone.  Why? In August 2014, I found out I had blood cancer, only after my first cycle of chemo I got an infection which turned into sepsis.  Ultimately, I ended up in a coma on life support.

I’m not writing this blog to dwell on this but rather to pass on some pearls of wisdom I have learned throughout my recovery.  I have met people along the way that are struggling to get back into the hobbies that they loved before they were unwell or are struggling with fatigue and muscle…

View original post 531 more words

1st Cancerversary & Keeping Busy!!

Warning: This post is just a way for me to write another list, apologies!

Tomorrow is exactly 1 year since I received the news that I had in fact got Cancer and began my long, continuing journey for recovery. I see this as a positive thing as looking back I have managed to do a lot with the year despite treatment.

I began with major surgery on my leg, learning to cope with being bed bound and then in a wheelchair, learning to walk again, radiotherapy for 6 weeks and 6 sessions of chemotherapy, yet I have managed to do some fun and memorable things. For example, I took a holiday to the Cumbrian Coast, lots and lots of afternoon teas, trips to London to see shows, a Spa Break with TCT, I got a Puppy, Holiday with Uni friends etc. I also managed to organise my own Charity Event which was an Afternoon Tea where we raised nearly £3000 for Teenage Cancer Trust. I also plucked up courage to sing a solo or two in front of everyone. I joined the Teenage and Young Adult Band which has helped a lot with my confidence not just in performing but socially too. During Chemo I met some of the players of Manchester United Football Club and also performed a solo whilst hooked up to Chemo at the hospitals Christmas Service. I went to London to see the Royal Ballet at the Royal Opera House and had a champagne Afternoon Tea at the Savoy. I went to the Royal Albert Hall and met Sir Roger Daultry and Noel Gallagher followed by an amazing performance by The Who. And of course then I walked on a Runway underneath Concorde, modelling a gown in aid of Teenage Cancer Trust.

I am very proud of how much Ive managed to do whilst being on treatment and at times very ill. I feel very lucky to have had all these opportunities and it is thanks to Teenage Cancer Trust and the Team at my hospital.

Since finishing treatment I feel very stressed when I have nothing to do, or nothing written in my diary. I am trying my best to fill my time but I also feel that I am doing this to avoid thinking. Becoming wrapped up in my thoughts is dangerous as it brings out anxiety and a feeling of hopelessness. I feel I am trying to keep myself occupied so I don’t end up doing that to myself. It is now very difficult to find enough things to do…. I’ve done everything!!!! Its a very panicky feeling and its becoming annoying!! Hopefully I’ll chill out soon!!! As cheesy as it sounds its as though I’m wanting to make the most of my time and to do interesting things with my life. I am lacking purpose at the moment which I used to get with my busy and intense job. I am aiming to return as soon as I can, hopefully by January 2018!!! LETS DO THIS!!!

(P.S. Nearly 8 weeks on & I now have eyebrows (kind of) and fuzz on my head!  Hurray!)

Coming to the end of Chemotherapy….

It has taken me quite some time to work up to writing another blog post, apologies. However, I’ve been finding this limbo land I have been thrown into quite difficult to deal with.

I finished my 6 sessions of chemotherapy on the 17th March. This I would have expected to feel celebratory however I have found myself feeling really sad and low. I managed to get through the worst of my symptoms which were a lot worse than had previously been despite a lower dose of chemo. Two weeks on I am left incredibly achy and sore all over, every muscle making me aware of the poisoning it has had to endure. Other than this and the mucositis clinging on, it is emotionally I am feeling not quite right. My anxiety has increased, especially when having to leave the house. I combat this by simply trying to force myself to do things, for example, I recently went on a trip with Teenage Cancer Trust to London to see The Who at the Royal Albert Hall. I was incredibly anxious before this trip, so much so I ended up throwing up before I got on the train to Manchester. However, I had a great time! I also experienced things I’d never dream I would such as meeting Noel Gallagher and Roger Daultry, touring the Royal Albert Hall, going on stage in front of thousands of people during the concert. This is what I need to keep reminding myself!! It all worked out in the end! The following day I also took part in a Fashion Show at Manchester Airport underneath Concorde which was an amazing experience. I walked, unaided, down a catwalk in front of hundreds of people and did so in heels despite being in pain.

This slideshow requires JavaScript.

I find that it is when I am at home and without much to do that I find myself feeling more depressed and just generally down. I am without motivation to do anything which is not like me! I have found, throughout treatment, that I am a person who cannot just ‘chill’ and like to be constantly busy or have a purpose. I am therefore going to attempt to do at least one small task each day to fill at least an hour of my time with something purposeful. PLAN!!!

I have also felt that in the last couple of months I have not seen many of my friends, through no fault of their own, just simply because I have been constantly unwell. However, this has made me feel quite lonely and disconnected. I also feel like I have lost confidence. My plan to combat this will be to try and plan little trips to see friends and meet up with people for meals or shopping or something. My next ‘thing’ will be to attend one of my best friends birthdays which will involve me getting trains and staying over night. I am hoping that in a couple of weeks time I will be in a better place mentally to deal with what used to be such a simple task.

LETS DO THIS !!!!! 🙂

SIDE EFFECTS

This particular blog post will be one of the most satisfying for me to write. Half of the side effects which I have suffered throughout my chemo I have not found anywhere online which is one of the main reasons I started this blog.

There are many types of chemotherapy, all of which are different strengths and therefore have many side effects. The chemo that I am currently having is called Doxorubicin and ifosfamide Chemotherapy which is used mainly on soft tissue Sarcomas. I am having a very strong dosage which unfortunately has meant I seemed to have suffered most side effects.

FATIGUE
One of the main side effects, which also seems to be a constant symptom throughout treatment is fatigue. This is very common throughout most types of chemo, it seems, but I have been surprised how disabling it has been. Usually a couple of days into my treatment I begin to feel very tired and end up napping constantly. When I am home I end
up needing a lot of extra help; to get changed, carry things; my mum has also had to help me shower and dress, as it leaves me feeling incredibly tired and weak. I find it very frustrating and a little humiliating needing so much help.

PAIN / NERVOUS SYSTEM DAMAGE
As well as the fatigue, chemotherapy can cause nervous system damage which can result in achy and sore muscles. It feels similar to flu symptoms in that everything just hurts, even just your skin brushing against your clothing. For me the tiredness got a little easier after 5/6 days after treatment but I cannot walk very much at all before my legs
start turning to jelly. Another annoying symptom is loss of balance which makes doing anything interesting to say the least. Combine this with shaking and trembling and carrying a drink without spilling becomes an impossible task!

CHEMO BRAIN
This is something I have almost definitely suffered from. ‘Chemo Brain’ refers to the memory loss which occurs whilst having treatment. Although I also have a very patchy memory of my surgery and everything since, the chemo brain symptom can’t be a helpful addition.

SKIN/NAILS
I have suffered quite a bit from very dry skin. The Chemotherapy seems to bring out patches of very dry skin which can be broken easily. I found that my hands particularly became incredibly dry and a little wrinkly which is odd. I have found the best cream to use was ‘Aveeno’ but I shall discuss my favourite and necessary products in a separate blog. The chemo also brings out ‘Radiation Recall’, my scar became more prominent and the area of the original tumor just became sore. The skin also becomes a little red/pink like when having radiation. Nails are another thing to suffer as they become very sensitive.
Macmillan say that nails usually become brittle and soft, however mine have grown incredibly long and if they become too long, are very painful. Nails also become ‘stripey’ which is quite strange.

HOSPITAL ADMISSIONS
When on treatment the hospital have rules that if at home and your temperature rises to 38’C then you have to to go into hospital as you are showing signs of infection which can be life threatening. Unfortunately I have been admitted to hospital after all but
2 of my treatments. Each time I have been admitted to hospital I have had to stay in for up to 7 days and have needed several transfusions and antibiotics. I am usually anaemic which means my haemoglobin (Red Blood Cells) are low, this means usually having
a blood transfusion to top me up. I have also occasionally needed a Platelet transfusion which are used in the body to clot. This means I can bruise easily and suffer from severe nose bleeds which can last hours (my longest yet is 4hours). I am always incredibly
low on white blood cells too which means I am at high risk of infection as I cannot fight off any germs. This is called Neutropenia, this is the reason that I will have to have a 20% lower dosage of chemo on my 6th treatment as it is now getting too dangerous to
continue at the same level. I just hope I won’t be as ill after my last chemo!!!

CHEMO MOUTH / MUCOSITIS
This is personally the worst side effect for me as it has affected me after every single chemotherapy and to a severe extent. Chemo mouth is a commonly used term and usually involves sore mouth and blisters which usually can be resolved with various mouthwashes and ice-lolly consumption. However, in my case I also have mucositis, a common side effect with my particular chemo type. For me this means a couple of days after chemo I begin with a standard sore throat but this progresses quickly and within another couple of days I am unable to eat anything and I have been unable to drink occasionally too. Mucositis attacks the soft layer of tissue which lines the digestive system from the mouth to the anus. This last time it wasn’t as bad in my mouth but was prominent in my stomach/oesophagus which prevented me from drinking properly and eating for a couple of weeks. It unfortunately affects your bum too and although not pleasant to talk about, this is the main side effect for which there is nothing online. Without being too graphic, it causes constipation,which when you do ‘go’, it is literally the most painful thing I have experienced. You are also left with a sore downstairs as it strips the mucus lining. This for me is incredibly embarrassing and frustrating as there is nothing doctors can give me to ease the symptom. I am quite surprised that there is nothing online on mucositis which effects the bottom as I can’t be the only one!???

I hope that this has been insightful rather than just a disgusting over sharing. As you can see chemotherapy for me is a breeze in comparison to all the side effects which go with it, which in my opinion are the worst part of treatment. I am very much looking forward to finishing chemo and trying to get back to being a functioning, healthy human!!

Hairloss & Selecting Your Wig

TIP 1 : GET YOUR HAIR CUT SHORT – DON’T WAIT!

When I was told I was going to have Chemo it was a cold hard fact that I would lose
my hair and at first I wasn’t too bothered. It was inevitable but I knew that having
the Chemo was vital. From the outset I decided that once I’d had my first session
I would cut my hair and donate it to The Little Princess Trust. I’ve heard many stories
of young girls leaving their hair for as long as possible, desperately clinging on to
what is left of ‘pre-cancer’ life. This however can end up looking very obvious, as hair
falls out in random clumps, thinning at first, then the bald patches appear. For me, hair
began to fall out around 10 days after my first day of treatment. I feel my hair didn’t
look too bad at first mainly because I had had a pixie cut. It is a horrid sight seeing hair
on your pillow in the morning, but this would have been worse if I had kept the length of my hair.

Having your hair cut is also a chance to try a style you would never usually try. I had always worn my hair long so a pixie cut was a drastic change which I actually enjoyed. It’s also
a way of taking control of your Cancer and not letting it rule you. This I found very important as choosing to cut my hair short felt like I was making a decision in a world which I don’t seem to have much choice in.

13

Also… fun fact – Some of my hair has remained on my head, all of which are red. However, this I am working up to shaving off as I currently look like Gollum underneath my turban and I can’t imagine it looking great when my hair does start to grow through again.

TIP 2 : BUY SOME TURBANS/HATS

Loosing your hair means its very cold all of a sudden!! Hats are necessary, but don’t have to look old fashioned or what I’d call ‘typical cancer’ styled. As a young person I found it difficult to find a ‘chemo cap’ which didn’t look like what the older women going through chemo typically wears.
I opted for a turban style hat, think Norma Desmond or a 1940s Hollywood actress. I found mine on Amazon for as little as £2.00!! There is also a huge choice of colours and patterns so you can buy a few to go with various outfits. To start off I recommend black and a patterned turban. I also recommend buying a soft beanie type hat to wear in bed. I found I was incredibly cold at night with no hair and my ‘bed hat’ helped tremendously!!

TIP 3 : CHOOSING YOUR WIG

As a young person (Under 25) I come under the Teenage and Young Adult Cancer Care unit, this meant that I was able to use The Princess Trust who supplied me with a real hair wig of my choice. I made sure that I went to the salon whilst I still had hair so that they could match my colour and if desired the original style too. I was invited to a local salon whom supply wigs and they specially colourmatched my hair and I chose a long style wig which they also cut my ‘token’ full fringe into. I have received many compliments on my wig
with many people not realising that it is a wig until I point it out.

I have however found that I have not worn my wig as often as I first expected to, choosing to wear my turbans; unless doing something particularly exciting which becomes a rarity whilst on chemo. My wig does seem to dig in to my temples a little which can induce headaches and can be a little itchy but as my Great Grandma used to say “Pride must abide”. Wigs are great when you want to feel like ‘your old self’; if your going out for a meal or meeting with friends, it can help with confidence tremendously.

 

 

 

Failing that….. opt for silliness….  🙂

 

 

 

img_7355

My Sarcoma Story

Get comfortable…. Its quite a long story!

My cancer journey began when in June 2015 I noticed my right lower leg was begin to get swollen. I worked at a Theatre as a dresser which is a very active and busy job and means I am constantly on my feet, this is what I put it down too at first. However, my leg kept getting bigger. At the end of July my mum persuaded me to go to the doctors as she could feel a mass in my leg and so to could my Uncle who is a doctor himself. When we went to the appointment, the doctor was less than helpful; laughing in my face when I couldn’t describe the pain and to top it all off, when told that a mass could be felt she did not even so much as touch my leg. The result of this visit was I was prescribed Physio.

After only THREE physio appointments in which my leg still wasn’t being touched and I was just handed print outs of exercises I found impossible to perform, my Mum decided to pay for a private Physio. My leg meanwhile was now incredibly painful and very large. This physio was at least thorough; I had ultra sound treatment, acupuncture, massage and various stretching exercises. After a couple of sessions on my leg, she was re-assessing the condition and she could not feel a pulse in my foot due to the swelling. I was immediately sent back to my GP for an urgent referral with possible Compartment Syndrome. By now it was the end of December.

13096120_10153817747878218_1393794647653533771_n  img_5439

I was referred to Hospital A (as it will be known) to a ‘leg specialist’. This appointment wasn’t until March 2016 when I had an X-Ray and was told “If you don’t hear anything – all is well”. 5 weeks passed and I had presumed that all was well. Then I received an appointment to have an MRI scan.The following day I received a phone call which just told me that they wanted to scan me again, which I was semi expecting as I was pre-warned by the radiographer. However, when I turned up to the MRI department they had no idea what I was talking about. It turns out I was to have a CT of my chest. I had lost it by now as I felt nobody was communicating with me what was going on and why these scans were being done. My mum, who was with me, I think knew by now what was happening thanks to her medical background. She obviously kept it to herself as I was beginning to loose it big time.

The following week, I was sat putting on my make-up in my room when the phone rang. It was the consultant from Hospital A. He firstly spoke to my mum and told her and then the phone was passed on to me. I was told exactly this; “You have a tumor in your leg, and it doesn’t look good”. So, first of all that’s breach of patient confidentiality as I am of adult age, and secondly, devastating news over the phone with no advice for what or who to talk to next. Unacceptable.

I was then sent to Hospital B which was such a relief in a way as we finally had some sort of support. I had a biopsy within days and within two weeks I received the bad news that I had cancer. This time however I was in Hospital B along with my Mum and Dad, Nurse Specialist and Consultant/Surgeon. I was diagnosed with a High Grade Soft Tissue Sarcoma and went on to have major surgery on my leg on the 17th May 2016.

It took a while before I could walk unaided, I spent months in a wheelchair and using crutches and for the first month or so I couldn’t even get to my own bedroom, having to swap with my parents who have a bedroom on the ground floor. Only a couple of weeks after my Op I had the staples removed, all 62!! After a while I began physio and hydrotherapy to get my muscles and bones working and moving how they should be. This was made difficult as the surgery caused some nerve damage to foot as well as there being a chunk of muscle removed. Hydrotherapy was really good, felt amazing to be weightless and really helped with relaxation as well as learning to walk again. I then began a 6 week program of Radiotherapy.

img_5618

img_5573     img_5570

4 Weeks after finishing Radiotherapy, October 2016,  I received a call asking me to go in for an emergency CT Scan, that evening. This was incredibly upsetting as I felt like I had finally finished treatment and was in the process of planning to go back to work. The following week I was told that there was a small nodule in my Right Lung, the Cancer had spread.  Argh! I had to then attend various meetings about whats next as well as suddenly at the age of 24, having to think about fertility. I was told I was going to need a strong dosage of Chemotherapy and because they wanted to start as soon as possible they didn’t recommend I start the IVF process as it is a timely process and would delay my chemo too much. This again was not something I even thought about and now my future was affected. But we plod on….

It is now February 2017 and I am just about to start Chemo #5 out of 6. I wanted to start a blog, not to moan about my diagnosis (Ive got that out my system now) but to talk about treatment and practical things which I myself could not find online. I want to talk about the effects of treatment, both mental and physical, which aren’t talked about much, if at all. I hope people find this interesting and somewhat helpful!!

Lindsay Kathryn xx

img_7321