3 years on – where does time go?

So, rewind to 21st September 2014 and this is the day that I lost my Mum.

photo

(picture from August 2014)

She had fought hard to overcome liver and pancreatic cancer however, it was not to be and after a four month battle she left us.   I can recall that Sunday like it was yesterday, but I try not to dwell on it, as I know she is now with my Dad and looking down on me, giving me guidance in times of need.  Memories fade with time but it does shock me how I can recall that Sunday from knowing what I was wearing,  the fact I went to Church and my sister and family went to Newbury Show, to the end and saying goodbye.  Then the drive home, the first person i called from the car, going home alone to the family home, pouring a glass of wine and watching a BBC drama about the military ‘My Girl’ (I think).  I also sent out the email  to everyone, something I had composed the day before so put in a few tweaks and it was done.  It’s weird how we grieve differently and over the past three years, it has come in waves but I am my mother’s daughter and fight on.

Then we rewind to 21st September 2015 when my sister and I unveiled a notice board in Goring at Westholme Stores to remember her and then following this I returned to London with a girlfriend and we went to the Chelsea Harbour party at the Rug Company and it is here that Hubert and I decided to get together.

outside Jacks giving speech

And

IMG_3268

For those of you who don’t know the history, we have been family friends for over 40 years, however my mother was always trying to set him up with other people.  I think it was because he was a bit of a party animal in his earlier years or, she was been her typical protective self.  However, I know now that she would be happy for me and I am sure they, as in my father, Hubert’s father and his uncle are having a laugh about it all.  Happiness is the key element I believe.

Then we rewind to 21st September 2016 and this is when I finished my cancer treatment. I am pleased to say that I am through all that now and finally getting back on track.  And, now I give back to the Royal Marsden Chelsea by volunteering, having given up work in February.

Now it is 21st September 2017 and I will be raising a glass to my journey over the past three years and what has been achieved, with my family and Hubert this evening as we are going to see my sister’s art at the Sunday Times Watercolour Exhibition.

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I thank all my friends for their support and I thank my boy for being my rock and I hope that the years ahead are smoother.

 

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A year after initial cancer treatment

Yesterday was a year, since I finished the radiotherapy I had after chemo and I just had the Herceptin till March but the main treatment for my breast cancer was over.

Last chemo

Shortly after this, I went away and was very apprehensive in case something happened, as for eight months the Royal Marsden Chelsea has been my safe haven.

Now a year has passed and what have I achieved since then?

I gave up work in February at Coming Home where I did fundraising for injured service personnel to adapt their homes.  Off I went on my holiday to Africa, which I had waited two years for and it was amazing, just what the doctor ordered.

infinity pool for newsleyyer

On my return however, I worried about what would I do with my time and enrolled to volunteer as a Friend at the Marsden Chelsea and have not looked back.

Firstly, I had to complete the Marsden March, 14 miles (half a marathon) which I did and managed that, to my surprise where I raised over £1,250.

finish line

So, the Friends volunteering well I love it, some people ask how I can work in a cancer hospital and are around patients who have cancer.  My answer has always been simple, it’s like being at home and I believe that it helps the recovery period and I can also give some comfort to patients.

I do ‘meet & greet’ and whereas I don’t remember asking for assistance on my journey, I wish I had as everyone is lovely.   I also do the Friends Shop and recently I have started doing a water tray in outpatients on a Thursday afternoon and enjoy it all.

Only this morning, after a few weeks of banter, Mr Gross who always says, that when I am sat on the stool by the reception, that I look like I am on the naughty step, charming.  Anyway, it turns out his daughter Laura has been writing a blog about her journey and what an inspiration she is at 27 years old.  It’s worth a look www.findingcyril.com.

After your treatment, you have a six months check up and then you go onto Open Access for the next five to ten years which is where I am at with annual mammograms.  Though you do have access to the aftercare treatments.

I developed a frozen shoulder as a result of the operation, stress through past job and carrying artworks which has been going on for about a year now and I am pleased to say it is finally in the thawing stage.    The pain I have had as a result, I can safely say is more than the operation itself and the treatment.  The frozen shoulder got me down as it was inhibiting and as a result I over compensated other parts of my body, as it was the right shoulder and I am right handed.  But as it thaws thanks to swimming, exercise and tennis and elevating stress, I believe with physio starting again on Friday I should be back to new soon.

I have a number of friends who have advised me to change my lifestyle and diet and I have always said I didn’t believe it and I don’t believe in a big change is healthy.   Anyway, the hot flushes at night brought by early menopause are not fun and a friend who was at the same stage said stop drinking red wine and chocolate after midday.  Immediately I started this and wow it stopped, it worked.

Then, fast forward to six weeks ago, I noticed I was craving sugar all the time and started to have the gremlin in my head telling me all kinds of things, the biggest which some of you may relate to, was it was back.

I went to the GP and told them my concerns as it wasn’t the general weight gain that comes with Tamoxifen  –I then learnt that you also had lymph nodes in the breast area and lymphedema was not only the arm.  Big mistake, as I took to the internet something I have always been very against and within two days I had self-diagnosed it was truncal lymphedema and it was back and maybe even spread to my liver.   Boy how the brain can get carried away and play scenarios and I was carrying it myself not wanting to share with friends and family.   So, I make an appointment and had 48 hours of hell, as not only did I have swelling but another lump had appeared.     I can’t thank Nikki in the Open Access Team and the Rapid Diagnostic Unit (RDAC) as they were amazing and after a rollercoaster of 3 hours in clinic, where I had a scan, a meeting with the nurse and the consultant and told it was nothing to be worried about.

The next day I saw Shannon in Lymphedema and again nothing just a little swelling and with exercises and lymphatic massage it will be fine.  I have a piece of padding which looks  corrugated  so must attractive by the end of the day as the imprint is very evident.

I believe the thawing process of the frozen shoulder and my sugar cravings all erupted and it was another wake up call for me.  As a result, I have not had alcohol for two weeks, well a couple of vodka and soda and lime but only liquorice and I don’t even craze it.    I am now have lymphatic massage and yesterday was the first and already I can feel a difference, so thank you Patricia, alongside my exercises and on Friday I start physio again with Megan, so my worrying is over.

I always tell people to be positive and avoid the internet and this was the first time I did not practise what I preach.    I am embarrassed to admit but I wrote emails, letters and started to plan a wedding and funeral all in one.   So, the moral of this story is don’t stop communicating and sharing concerns and know that in the Marsden they have trained nurses to hear it all.

I believe that I am where I am now is thanks to the support I get from everyone at the Marsden and especially Karin on Wallace Reception and a number of the Friends Volunteers and that is why I enjoy being a volunteer, giving back to the place that saved my life, not once but twice.

 

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Giving back by volunteering at The Royal Marsden Chelsea

Over the past few years, I have certainly had my fair share of Cancer hospitals and what I remember the most was the friendly faces that would greet me, show me the way, and comfort and pacify me.

So, rewind three years when I was the main carer for my mother and spent a lot of time in the Spires hospital in Reading and it was the nurses who kept me sane, as been a carer is not an easy task.  In fact, at times you have to be stronger than the patient and show no weakness.  Knowing what I know now first hand, helps me when I am volunteering as a Friend of the Royal Marsden Chelsea.    Also, when i volunteered at Maggies Centre’s head office in London i realised what amazing facilities they had for cancer sufferers and their families.

Having experienced the Royal Marsden Hospital Chelsea for the past 18 months or so, as a patient, I always felt safe their, as the ambience that they create inside reflected this.   From walking in the main front door and being greeted by a smiley receptionist who always replied to my ‘good morning’ as I came in for treatment.     I recall in my time of treatment two people who were their when I was disoriented and that was a lovely ambulance man and a cleaner.  And, still to this day when I see them we say hi.  One think that I did learn on my NHS induction day was, that everyone in the hospital should take pride in their jobs and help everyone and I can safely say this is the case.

Also, something that was key to my treatment was the Friends trolley which would come into the chemo area and the trolley dollies as I used to call them were always a breath of fresh air.  I wouldn’t call them that now as i think most of them would shoot me!

So, I finished the main haul treatment in October last year and then the hormone replacements end of March and as i had given up work,  i decided i was going to give back to the place that saved my life and if i am honest, changed my life and made me the ‘real’ Sarah.

I joined the Friends of the Royal Marsden Chelsea and i really love it, whether i am in the shop or on Meet & Greet.   I will be doing the training in due course to be in the café, pushing the trolley and working on the wards – all very important areas.

I have had to train myself to use the official names for the units, as i called the Medical Day Unit where we had chemo, the Chicken Factory – well it was like that.   And, then outpatients on the 1st floor was the fish tank as their was one and a focal point helped to remember where i was going.   Now i am becoming a dab hand at finding my way around and enjoy helping people though i have had a couple of mishaps.

In my first week, i forgot to the ask the ambulance men bringing in a patient if he was NHS or private and we went all the way to the other side of the hospital, only to find we needed to be somewhere else – slightly embarrassing but they all saw the funny side of it as i was honest and stayed with them till he was in the right place.

Then, possibly the most embarrassing story but how was i to know who the gentleman was.  Anyway, an NHS big wig who knew the hospital but wanted to be escorted to meet the Chairman of the Trust.  So, off i walk out of the hospital, along the Fulham Road and down the side road thinking it was the offices, oops no.  So i smiled and we walked onto  the conference facilities and bumped into doctors, who were almost bowing down to him and i thought OMG who is this chap.  Anyway, i then realised that the Rapid Diagnostic Unit is also known as Mulberry House, 10 minutes later i got him to the right place and whereas he wasn’t a happy camper, he did say thank you.

But on the whole, i think i give patients and visitors ‘peace of mind’ and over the past month since i started doing the meet and greet i have met some lovely people.

Then, i do the shop of a morning and its different but it is also a hub for chitter chatter and i have met some amazing people.  Some of the stories have made me laugh (something you can do as a fellow patient as there is a strange sense of no boundaries) and some have had me in tears.

But i really hope that me being Sarah can help people overcome any fears they have.   I kicked Cancer into touch and i am a different person for it and giving back my time,  is making me the person i want to stay.

Only yesterday, i met a lady in the corridor completely stressed out as she had been sent to the same department twice but from two different directions and was going to be late for her appointment.  So, i said lets find it together and off we went.  She was off to Lymphatic Drainage and was scared about it, but when i delivered her to the waiting room she was relaxed, just listening and reassuring costs nothing.   I also told her about the amazing charity ‘Look Good, Feel Better’ she needed a lift so that she could take the plunge and go on holiday.   Having been nervous myself to go away, i knew how she felt and when you say it out loud it helps.

I have agreed to do two sessions a week and i am a better person for it and still get that safety feeling when i am in the hospital, something if you haven’t experienced it you may think i am a little mad.

So, if you have a spare couple of hours whether it’s once a week or once a month then think about giving your time to a very worthy course, and volunteer for the Friends of the Marsden Chelsea.

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Royal Marsden March – I did it

Well, I did it, I managed to walk the 14 miles on my own,  in four and a half hours which I have to say is not a shabby result not that the Marsden March was a race.

So, lets rewind to March 2016 as this is when I said to myself as I sat in the hospital – that will be next year.   I had to visit for my stomach jabs one of the joys of being neutropenic.

So, I signed up in November having picked up a leaflet in the hospital and decided that I was going to do it alone.  If friends wanted to join me they could sort themselves out as, I was doing it for me and this was a time I was going to be selfish and not become a team leader.

Training, umm not sure that was done but I managed to get blisters from old trainers in January before going on holiday so, they were binned and a new snazzy pair purchased on my return from holiday.

my trainers

I had two weeks to break them in and that was assisted by my week walking buddy, Julian and then at weekends it was wellie walking as we walked the dogs in the country with Hubert.

So, Sunday 19th March had arrived and my slot was 945am so, we headed off at 915am and I off I went with my green balloon, bottle of water and an energy bar and Hubert walked back from Royal Marsden to Chelsea and Westminster Hospital and off I went.

the start

I didn’t know the route but the first part was familiar as we made our way up to Putney Heath and into Wimbledon Common and then to Raynes Park and it was half way, 7 miles.   So, I had my picture taken.

Half way

I was feeling good at this stage as I had set a good pace as it was 11.54 so just over 2 hours to half way.  No rain, but went from hot too cold to hot and hoped that a banana would help.

Then, I hit the ‘oh my god why am I doing this?’ at mile 10 just after going past the point where the children and 5 mile walkers came on board.   My legs and butt were tired and walking it alone was taking its toll, I needed a kick up the arse.   I had messages on my phone which lifted me to the last 1 ½ miles and then I knew after Nonsuch that the end was so close.   By now, I had joined a group of children, about five of them walking to support their friend who was himself walking after battling Leukaemia (twice) – a real inspiration.

Walking on my own gave me time to reflect my journey as I didn’t listen to music, I just walked and it was the determination and positive thoughts I had when undergoing treatment that made me finish.

Then, I could see the finish point and I knew Hubert was at the end but would I miss him, as I didn’t really know how many people would be at the finish line, but I saw him and boy was I grateful that everything had gone like clockwork and he was there.

finish line

I got my medal and we headed to the car, back through the walkers, some of which I had passed during my March and some looking how I felt so I said it was only a few more minutes and it would be finished.

the end

We got to the car and Hubert drove back and I was shattered but in a good way as I had raised over £1,000 for the RMH, who had saved my life.

We went for lunch and having sat for half an hour it was like I had aged 50 years as I wrenched myself out of the car and it took about 5 minutes for my feet to re-engage with my body.    I was grateful for a hot bath and a good night’s sleep.

Today, I feel it in my bum cheeks but then if there was no pain, would I have felt like I had achieved it?

Would I do it again, maybe not but I will certainly offer to marshal as a volunteer next year as they were amazing giving us the encouragement.

This morning, I notice that I have gone up to £1,200.00 and hopefully it will climb a little bit more.  Thank you to everyone who supported me on this March this was an important part of my journey.

What next …. Well watch this space as you know me I like to have a challenge.

Thank you to all the staff at the Royal Marsden Chelsea (NHS) you saved my life and gave me the strength to KICK CANCERS BUTT.

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What changes in your body during cancer treatment?

I believe that two things change in your body while you go on your cancer journey and they are:

  • Your brain

And

  • Your looks

So, let me begin with my brain, well after being diagnosed you really do reflect on life, you ask why me, you ask what have I achieved and what do I still want to achieve.    And, for sure you start to look at your life and take an inventory on where and what you want to do going forward.   In some respects you are hurt by some of your friend’s reactions and how they disappear off the surface of the world and  in other ways you are inspired by others, usually new who fill their shoes.    But positive thoughts are the key to getting through cancer treatment and the personal journey you embark on.     And for me, it was writing a blog, keeping a diary (usually with the crap stuff), starting yoga which I never managed and listening to healing music, you need to find the channel that works for you.

Then, there are your looks and this is what you feel, not what others see or say, and let me tell you as I come to the end of my treatment the next person who says ‘ooh you look so well’ may well get punched.      I haven’t changed in my body, I didn’t put on weight and I didn’t loose weight but my visual change was my hair.     I have written before about the changing hair styles but when I started the new chemo it was chemo six where I noticed the hair loss again and now I don’t see me in the mirror.  Well of course it’s me but I don’t feel me till my hair comes back and it frustrates me.  At the moment I wake up in the morning to a pillow full of hair and my bathroom floor is a carpet of hair and I don’t like that.

I stay positive though as my hair did grow during chemo which is unusual.

And, in fact only last week I had a good chuckle as a friend described my hair loss like a dandelion blowing in the wind, as we sat in the garden and a gust of wind blew and it looked like below.

A dandelion blowing in the wind ..

image of dandelion

My hair ..

Sarah is going bald

I always said I could handle going bald but in reality loosing all your body hair is ok it saves on razors but when you are bald you don’t feel feminine, or at least I don’t.  You can put on make up and your favourite outfit but something is missing and its positive thoughts and knowing I am coming to the end of the journey that will pull me through.  That and the fact I have a tight support team around me and my best friend, Hubert.

My advice to anyone embarking on the journey is that you must talk whether to family and friends or the chemo team or chat forum/blog but being open is the only way forward.

Here’s to new challenges ahead and the excitement of not knowing what colour my hair will grow back …

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Do you or don’t you opt for a pic line during chemo?

So, rewind to January when I had my first chemo and I didn’t know what to expect as I didn’t and still do not read the 100’s of pamphlets that they give you, my rule of thumb being I listen to the professionals and do what they say.

Anyway already on chemo one, I had my arm/hand in hot water to find a vein for the cannulae to be inserted so that they could administer the chemo.  Taking bloods was ok but it happens regularly so you get bruises and the more chemo you have the smaller the veins become and remember with breast cancer they only can use one arm.

Then, fast forward ten days and I realised I was neutropenic and spent four days in hospital at which time they had two attempts to get a cannulae in and then to take blood I had over twenty one needle pricks which included trying in my feet.   As a result on being discharged, I demanded a pic line and off I went to the sister hospital Royal Marsden Sutton.

Below is an image of what the pic line is:

PICC-line-front-labelled_tcm9-45583

Pic then became my new best friend and after a month, I didn’t even know it was their unless someone squeezed my arm or bashed into me.

The pic line has meant that I can give blood, receive chemo, have antibiotics all through the same tube and all I have had to endure is visiting the hospital once a week to have it flushed with saline and the dressing cleaned.

It is visible but its covered by a plaster to avoid infection and then a bandage and for me it is a reminder that I am ill as initially it hadn’t hit home.   I have never hidden it, so its visible to people in the hope that they actually stop to think before they make a comment.  It can make some people queasy as I have witnessed.

The only real draw back is that I can’t swim which with the weather improving is a shame but I have to confess I am not a water baby and for me to swim it needs to be not only very hot outside but the water warm too.  In fact I am adopting my partners rule of thumb it needs to be 25 degrees.

When you shower you need to wear a sexy blue armband but apart from that, you forget about it.

As my chemo is coming to an end, I know that pic will need to be removed but I have already made it clear that this will only be once I am assured no more treatment.

I met many ladies during my sessions who didn’t opt for the pic line some for cosmetic reasons and some because it would draw attention to colleagues at work they were undergoing treatment and everyone is an individual.  I can hand on heart say that having a pic made my chemo more pleasurable – if you can even make a statement like that!

I will now also confess that I didn’t read the literature on the pic line as they took me through the steps before it was inserted and yes there were side effects but the reality is sadly the whole journey comes with a long list of what if’s.  I have Salem, my first chemo nurse at The Royal Marsden to thank for mine.

My tip for anyone considering a pic is to speak to the chemo nurses as they are a fountain of knowledge and they want to make the whole experience as stress free as possible.

 

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The ever changing image that goes with Chemotherapy … hair loss

 

Sarah and sarahsarah.before chemo for blog

 

So, rewind five months when I was diagnosed as having breast cancer and after the initial shock, it was not till I started the chemotherapy in January that I realised that maybe I would be going through a number of changes in my image and the biggest would be hair loss.

The Royal Marsden where I am receiving the treatment offered me a session with a make up company which I did and was chuffed with that as I met some really nice ladies.  They also offered me an appointment with the wig consultant but that was not something I wanted to consider at that point and I lost the number.

So, off I went to see Paul at Kensington Hair care having been recommended him by my dear friend, Sarah D and I started my journey with him.

My initial meeting was after my operation when I couldn’t even wash my hair so I had a couple of hair washes and blow dry’s to make me feel good.

After chemo one, my hair started to fall out and in fact I lost 70% of my hair even though to the outside world it probably looked no different, as I had very thick hair and being tall not many people could see my bald patch.   But I knew the bald patch was their and I knew my hair was thinning so it was not always overly helpful when people told me I was lucky with what I had – lucky but I was going through the treatment not them and I had always had thick hair so it was an emotional change in image that I had to deal with.

I do count myself extremely lucky in this journey as I am now half way as the only side effect that I have experienced has been the hair loss  and not only on my head but I look at that as a saving on razors!

After chemotherapy two, I decided to have my hair cut and created the new look.

march haircut for blog

Then over a period of 7 to 10 days it all started to change, as I went from blond to dark grey, to light grey and then I went from straight to curly, to ultra curly so it was always a standing joke with Hubert and great excitement  when I woke up to know what it would  – the unknown.

My hair also changed as during all this I was advised to use baby shampoo so my hair is all soft, as I refer to bum fluff texture (no comments please).   I also couldn’t use a hair dryer though I have to confess the odd time I did as my head got cold with the bald patch on top and I am not really a woolly hat girl though I have succumb.

The hair loss did it effect my chemotherapy and the use of the cold cap, well after chemo three and them changing my cap,  I swore never again as the headaches were intense afterwards and the iceless that formed after it was removed on my head were unbearable.  However, I did endure the cap again for chemo four last week but had a ceremonial goodbye or even good riddance to the cold cap as I will NOT be wearing that again, that side of vanity has run its cause with me.

So, I have gone to the next stage of hair cut.

April haircut for blog

I preparing myself for the inevitable and what Paul did say was that my hair on the neckline and top of my head was fine like baby hair and had not grown in the five weeks but the hair on the sides and front crown had grown like a weed as normal, so who knows what I am going to expect as I continue the next four sessions of my new chemo regime.

But what has helped me the most through this process, is that Paul is working with me to make me feel good and more importantly look good.   I am lucky that I have had short hair before and in fact prefer it and by going short in stages, if I end up as bald as a coot I am not going to be freaked out.  However saying that, I hope that doesn’t happen and have a few nice Hermes scarves on the ready that my Mum had.

In fact,  when I was at the salon on Saturday we talked about dying it and covering the grey and I said that would have to wait till after Radiotherapy but if I have no hair maybe we dye my head anyway.  He thinks I am mad but you have to have a sense of humour and his professional approach and knowledge of face shapes and what works has made this journey of hair loss a lot less scary.

So, if you are going through chemotherapy and don’t know how to go through the transition of the different looks,  please take a look at Kensington Skincare and speak to Paul as he has been my hero and I still have a way to go.

www.kensingtonskincare.co.uk

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