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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What the chemo does to you?

Well I can certainly say that chemo is like an evil spirit it knocks you out and makes you feel like crap.

However, chemo is all part of the journey to recovery and we have to undertake it o make ourselves well again following the cancer treatment and everyone’s journey is different.

I have to put my hand on my heart now and be honest, as  I didn’t really believe I was sick,  I didn’t spend hours on the internet or hours reading the information given to me, most of it went in the bin –  all I did, was listen to my Oncologists and took whatever they said was the bible.   I read or, should I say glanced over the paperwork given to me with prescriptions, always saying I was unique and that the paperwork and leaflets were written for 1 in a 1000 and I was not that.   However, the reality hit me 10 days ago and now I know I am unwell and it’s now about changing the way I think and more importantly live.

The most important part of the journey is to be positive – no negative people and thoughts and to stay focused and surround myself with love.

10 days ago, I got a viral infection after chemo 1 and ended up spending four days in Chelsea & Westminster where I had an experience and a half but that’s not for this email.  But one think I did learn, was just how quickly the poisons get into your system and my white blood cells got screwed up something I don’t wish upon anyone.   Anyway, I left hospital finally having managed to get my blood pressure up only to go for more bloods at the Marsden so in total over 24 injections in 72 hours and I felt like a pin cushion.

Fortunately, I was well enough for a pic line and off I went the next morning to Sutton Marsden and I felt like a new lady, ok a foreign body is in my system for the next 7 or so months but no more needles or at least that was what I led to believe.   Also, now I had a visual reminder I am sick and finally it hit home.  It also doesn’t help with the arm band you have to squeeze into each morning to shower and that every week it has to be flushed not something I plan to learn to do myself.

Round 2 of chemo was last Friday and I was feeling ok, hair was coming out – I have lost about 70% but fortunately I have thick hair.  The rest of my body hair is 90% gone and I have to say that’s a blessing, I’ll save on razors!

2nd chemo did hit me and I have been more tired however, I don’t feel guilty if I need to change plans which is new for me and now it’s about living every day as it comes.    I did the three day pills and then I started the daily injections in my tummy.   Boy I wasn’t prepared for these as basically being pumped with a bogus virus to kick start the white blood cells and the side effect, well it’s like you have had a round with Mike Tyson, quite literally.  Not wanting to cause alarm I slept on it and the next day at hospital had a melt down as I started to panic, I was going to have another viral infection but it was all part of the process.   My chemo nurse is amazing and for the first time I was me, no act, no face to put on, they have seen it all and know the signs and it was for the first time I realised I need to ask for help and not hide and that going for these treatments on my own was a good way forward.

I have spent the past couple of days sleeping a lot and watching crap on telly, yes for those of you who know me I am back on track with Jeremy Kyle!  I have also being talking to friends and fellow suffers and something happened last night, I relaxed and breathed and today I feel back on track.

Emotions go all over, one moment I am crying the next laughing and then I worry how I look, as it all goes to pot but I am still the same old person just battling the ‘PT’ (preventative treatment).    Today, when I got to the hospital I bumped into another Sarah a lady I’d met on the Look Good Feel Better course and it was just what I needed, we both had hit a wall, having a blip but we could laugh about it and work through the unknown the fears as some of these are unspoken but understood.  She is 8 months into her PT having had a reoccurrence and some shocking news that it may have caused damage elsewhere.   I am only 6 weeks in but there is something one shares now with these others and it’s very powerful.

This blog is starting to be like a ramble but I need to share my feelings as it’s not always easy to talk with friends.    I have amazing friends around me who have become rocks for me, I have made deeper friendships with people as a result of this and I have learnt to discard the crap and cherish the good.

I spoke to a lady yesterday who has just completed her 8 sessions of chemo and she has a young family and I take my hat off to her as she had to stay strong for them and knowing what it is like as a child to see a parent unwell I am not sure I could have had her strength – she is an inspiration.

Then, there is Sarah who I thought lived with a partner only to discover today no, she is alone and that must be scary.   I have my Hubert and it only took us 40 years to get together but I couldn’t be without him now, we are going to come out the other side of this journey and be stronger and have the most amazing stories to share which will all be ended off with one fuck off amazing holiday.

Lastly, I must thank Henny at Coming Home where I work two days a week, as for me the working is key and it has certainly given me drive and whereas I may not get to be here as much as I like, over the next few months having a purpose is critical to my personal journey and there are some really exciting projects we are working on.

I’m going to seek help now and start to tackle this PT head on and start by seeing a nutritionist and learn what works and what doesn’t work for my body, as it all helps the white blood count and this is going to be my shortfall.  I am also going to look at complimentary therapies as quite frankly I’ll try anything right now.

My ending comment is to all my friends and colleagues reading this please do check yourselves regularly and if you find an abnormality GO TO THE DOCTOR.

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The new diary of my ‘cancer’ journey

Tuesday 5th January 2016 is a day I will not forget in a hurry, it was the day I returned to The Royal Marsden to meet Dr Roeche and get the treatment plan news for my newly removed breast cancer.   Having returned on Christmas Eve to get the results that they had got all the cancer out when they did the operation on the 15th December so I could have a good Christmas and that I certainly did.

I was told that I couldn’t go on holiday and that hit the hardest.  Already from being diagnosed to the operation has been hard but,  I was planning a nice holiday during or after treatment which was expected to be a few weeks but sadly this was not to be the case and it will be September before I can plan that trip.

The second blow was that I would be signed off work – bollocks to that I said, and I basically told them to measure me up and get the box ready because if they took that off me I would have nothing to work too.  I don’t think they realised just how head strong I am and whereas I will not do anything to jeopardise me treatment if I can work then I work.

The reality however,  was that the tumour was bigger on inspection so grade 3 which is the biggest and it was stage 2 cancer and not stage 1 as initially thought.  So, treatment would be more intense and that I would be starting in two weeks.   It would be 6 to 8 months of chemo every 3 weeks and then a bout of radio therapy for a month to prevent the breast cancer spreading.   Then, I would need a further month of radiotherapy having decided I didn’t want a further operation unless life threatening for the nymph nodes.  Why, because one had been cancerous and this is where it can spread.

What did I think after the Dr told me?  It was shock as not what I had imagined.  But, more importantly ‘fear’, but I kept my head together and heard my mother saying ‘for goodness sake keep it together’.  I went home and that evening as I sat on the sofa with my boyfriend I did have a few tears but shielded  him as he didn’t really sign up for this but I have to say has been an amazing rock and for that I love him.  I do have to tell myself that whereas we have only been together for 4 months we have in fact known each other for over 30 years.

I know that if I want to cry I must cry, if I want to scream to scream and most importantly if I want to be alone to not feel guilty and friends and family will have to get over it.

For a while, I need to become selfish to think only about myself to stay healthy, eat healthy and stay positive.  This will be achieved with my positive healing music that Nadya introduced to me and my healing hippo that sits by my bed which she also gave to me.

When they told me about the chemo and needing a cold cap, I was like, well I will loose my hair so what does that matter.  However, I will be signing up to the cold cap as I have heard of people who just loose eye brows, well that would be one to save on threading!   However, I am going to go and have my hair cut in preparation but not bother to colour and then if I loose it, when it comes back maybe I will come back as a fiery redhead – ooh that would be fun!

The most important think now is to laugh and continue living my life as it is not a death sentence just merely a few months of my life where I need to put my life in the professional’s hands and stay focused and know I will be coming out at the end a strong individual.

To all my friends you have all been amazing and for that I can only say a huge thank you and this is just the start of a journey that will be full of experiences but I know I have you behind me wherever you are.

 

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