I quite like Mondays. It’s the start of my super short week. I’m now so incredibly tired that my week only lasts for two days. Basically I feel sort of normal on Mondays and Tuesdays, and then the treatment begins again. Weekly chemo feels relentless. I’m spending most of my time in bed. I just want it to end. Last week it nearly did.
A couple of days before I was due to have chemo#13 I thought something I hadn’t thought before. For a few brief moments I decided that I didn’t want to continue.
I felt so ill and frustrated by the horribleness of it all. It’s not just the toxic drugs that are so awful but all the other stuff too. Last week I spent around 12 hours over three days at hospital with scheduled appointments, procedures and tests.
When I woke up the next day after the wobble, my symptoms seemed to have faded a little. I wasn’t so exhausted and I knew that really didn’t want to end it early. Even so I came up with a list of pros and cons. I realised that there is only one thing that matters, it’s first on the list and outweighs everything else.
CHEMO PROS
*It’s hopefully helping me to live longer
*Chemo makes me feel that I’m doing something to fight the cancer
*Somehow it makes my skin glow. I know this is totally ridiculous but everyone tells me that I look really well when I actually feel so ill…
CHEMO CONS
*Extreme fatigue, most days I’m close to collapsing
*Lots of random pain all over my body, especially in areas that I’ve had surgery
*Fingernails and toe nails hurt and feel like they’re going to fall off
*Fingertips are a bit numb, meaning I’m clumsier than normal
*Painful pins and needles in my feet and hands
*Breathlessness, I can’t really walk and talk
*Painful to walk and I can’t exercise like I used to
*It’s making my hair fall out
*My eyes are watery and sticky as I only have a few eyelashes are left
*Constant bleeding nose
*Comprised immune system and I could end up dangerously ill if I get an infection
*Steroid induced mood swings
*Insomnia
*Disgusting taste in my mouth
*Dizzy spells
*Bloating
*Always starving thanks to steroids
*Chemo weight gain
*Mouth ulcers and sensitive teeth
Now that’s some list. The treatment is truly horrific. You need to be totally convinced this is what you want. I am but it doesn’t stop me from sometimes pretending that it’s not happening.
Before chemo#13 started there were lots of things I had to do at hospital. They required me and mum to navigate the confusing corridors which link the mass of buildings together. On our way back to the ward we made a break for freedom!
Instead of following the signs we left the hospital for an outdoor detour. The morning sun warmed my skin and I felt amazing. For a moment I wasn’t a patient. I was someone out for a walk with their mum, trying to convince us both that we weren’t lost.
As we weren’t that lost, it was soon back to reality. It was the first time I’d faced the toxic drugs after questioning whether I wanted to carry on. As I was hooked up to the drip I knew I wanted to continue.
Some people have been in touch with me on the blog to say that their elderly relatives are refusing to have anymore chemo and they don’t know what to do. I can only really talk from my own experience.
For me the most important thing is being able to have a good quality of life. Aside from the cancer, I’m a fit and healthy 41 year old. I feel very resilient. Despite the long list of chemo cons, I’m lucky that my body is capable of withstanding the treatment and I’m coping well. However, I know that I’ll probably need more and more evil chemo cocktails after this course finishes and in the future I may feel differently. There may come a point when I decide that I’ve really had enough.
This is such a personal decision. I’m convinced that I’m doing the right thing. I feel that I have so much to live for. Whatever it takes, I’m going to make it through the remaining five sessions of chemo.
helenfawkes 
Go for it girl! Having had friends who have come through cancer, and lost a people to it I have thought about how people handle the illness, and I am convinced that you have want to grab life to keep going, and if someone doesn’t want to go for more treatment persuading them may just make things worse for the person who should be taking their own life decisions. I didn’t understand the course that a family member took, but I respected that it was their choice. So we should all grab life in what ever way is right for us. Thank you for your diary. XXX
Please stay strong and you will get through this i know it must be hard for you but think positive thinking of you and your family xxx
Helen, you will get days like that now and again, the trick is to postpone any major decisions until you feel differently, which will take longer sometimes than others. You’ll have your own ways of dealing with blips like that…..whatever it takes and whatever it takes will be right for YOU. Thinking of you,
Clare
X
Please keep going Helen. My wife passed away on Friday after 16 years of fighting secondary Brest Cancer. I have drawn strength from your blog whilst caring for her. It helped me understand what the chemo was like for her as she never spoke about it she just got on with it. Her hip had shattered last year, her kidneys had to have nephrosotomy’s in (not sure how that’s spelt) at Christmas. She had had a punctured lung and the tumours were mutating to beat the chemo until there was nothing more could be done. She came home from the Christie last Tuesday and she passed as myself her son and mother held her hand though out the night. She fought and fought as you have.
Wring every last drop out of life, although I do not know you I love you. Keep going Helen xxxx
Very moving, and beautifully written, Paddy.
Oh Paddy I’m so sorry to hear your news. Your wife sounds like an incredible woman. She put up such a long fight. I cannot begin to imagine what you have been through and what you now face but I’m glad that in a small way my blog helped you. Don’t worry after my wobble I am more determined than ever to continue with the chemo and live every last moment. I know that I am not the only one to be moved by your story, thanks so much for sharing it. Thanks too for the inspiration that it’s given me and others in a similar situation. I would like to send you lots of love from me. xxx
Thank you so much for those lovely words. Lesley changed my life I loved her so much and it hurts but knowing my story may have lifted you a little gives me a massive boost. Much love xxxx
Hi Helen, you probably have not noticed but I have not added a comment to the last couple of your blogs. I always look forward to receiving them but I felt I could not improve on the comments already posted. After reading today’s posting however I just had to add my bit.
Please, please, please try to keep your three “pros” uppermost in your mind. I don’t doubt you when you say that the treatment is truly horrific but it is this treatment that makes up your “pros”.
If my thoughts and good wishes, along with all your other followers here, could effect an instant cure you would be “as fit as a butchers dog” by now.
Take care, stay strong and remember you are in all our thoughts
Please keep going Helen. We need you on the catwalk next year.
Lots of love,
Adele
Please keep going! I too, have thought about stopping- my next chemo is tomorrow, just as I’m starting to feel ‘normal’ again and the knowledge of the impending sickness/wellness/sickness really gets to me. The chemo is a horrid medicine, but its the only thing we’ve got that works. You absolutely can get through this and continue to inspire and touch people like me. I identify with the ‘you look so well’ statements too- except for me its a ‘con’ not a ‘pro’ as I feel that there’s part of the sentence ‘…are you sure you’ve got Cancer?..’ which is being unsaid which makes me suspicious, which I don’t want to be. Be strong, take strength from all the people posting here and your family and friends. Rubbish as it is, you can do it!
Helen, your blog, and these comments, are so heart-wrenching, I’m not sure what to say – except that so many of us are still reading, and still hoping that you feel it’s right to carry on wringing every last drop out of your exceptional life x
Xxxxxxxxx keep hanging in there girl xxxxxx
I have read your latest blog and believe that your honesty will be an inspiration to all who read it. Keep on with your fight and remember you have an army of followers behind you with all our love and prayers. X
Hi Helen when you write the list of cons I can completly see why you want to stop the chemo. However, i am so glad you do not stop and keep focusing on your list for living. You are and incredible and strong lady and cancer will not beat you. Sending love and strength to keep you fighting x x x x x
A brilliant post Helen…chemo is crap to say the least and like you, I don’t look forward to the day when it becomes so hard it doesn’t feel viable any more. You seem to do so well with it and so I hope that, like someone above said, that you manage to focus on those few ‘pro’s’ when the cons are really getting to you. But with all of this, only you know how it feels for you and like you seem to have done all the way through this, only you can make decisions of how you handle your life. xxxx
This is such an awful disease and many have said that the treatment is worse than the illness. I hope you stay strong, enjoy your family and friends, and continue completing your list for living. You have very many of us behind you admiring you for how you are dealing with everything that is thrown at you. If love can help you have that in abundance from so many like me who don’t know you but feel as if you are my friend. xxxx
If I could package all the good wishes being sent to you by everyone I would. That way you could open it and take a “good wish” out every day and lift your spirits. You have been such an inspiration to many people, especially those who are going through similar experiences. Remain strong Helen and be safe in the knowledge that people are truly willing you on with your fight. Best wishes for a better week x
Janice, that’s such a lovely thing to say. Getting wonderful messages on here lifts my spirits. Thanks x
Another moving, inspirational, and hard hitting post Helen. One word sums up your life journey so far for me – FORTITUDE!
Definition from the dictionary – Noun: Courage in pain or adversity: “she endured her illness with great fortitude”.
That you do! An inspiration.
Ax
Keep going Helen, you will look back on it one day and it will just be a blur on the horizon !
Your list brought back memories for me 5 and a half years ago with advanced and
reoccurant Ovarian X
Helen you have such a knack of writing what I am going through, but unable to express as well as you. Your ‘con’ list mirrors mine, except I would delete nose bleeds and add drenching sweats. Sometimes I think that I would be fine if it wasn’t for the awful taste in my mouth, then on other occasions I think that the worst thing is feeling so frail. When to give up the therapy is a tough question, because whenever I think about it, I feel I am letting my husband and family down. It is interesting and moving (see Paddy above) to read the comments left on your site, so keep on blogging Helen. Maureen. xx
I doubt you could ever be viewed as Letting anybody down. Much love to you xxx
Keep going Helen. I’ve not had chemo but i did hear of another ‘plus’ the other day – that it keeps midges away… So perhaps you can make use of it later on to fulfill number 46 on your list as in my experience puffins are often best seen from places that can be midgey. I’ve just been diagnosed so I’m coming to terms with the pre-treatment limbo, an uncertain future (well recognisably uncertain as opposed to the sort of uncertainty pre-diagnosis), and getting used to telling people. Your blog has really helped me a lot. THANKS
Excellent, that’s a midgy bonus!
I’m so sorry to hear that you’ve just been diagnosed. It can seem so confusing this pre-treatment limbo but soon you will find a way through it with the help of your doctors etc. It’s not easy but you will be amazed at how strong you are. Good luck and thanks to you too.
I love reading your blogs and always want to write something to try and offer something of use to help you with your fight but I end up writing stuff and deleting it thinking ‘can’t say that to a woman who has cancer’, it just never seems enough for someone who inspires many. I look forward to your last chemo session and your road to recovery, I want to hear about all of your bucket list expeditions and keep reading your blog..keep fighting. Thanks for sharing with me xx
I came across your blog through Twitter – Helen, you are incredibly brave and from reading about your experiences, I can tell you have got the fight within you to keep going – to get through the chemo and keep battling against this horrible disease.
Thank you for sharing.
I, like you, am 41, and a sometime journalist and foreign correspondent.
I think about you every day and reading about how on the way back to the ward you made a break for freedom, I regard you in much the same way as the main character from the Shawshank Redemption.
Get busy living!
Hello Helen, I have just come across your page by accident or was it supposed to happen, I don’t know but here is my story, I hope you find some comfort from it.. I worked in the hospital and became ill with pneumonia, and then a blood clot on my lung as I had been in bed for 2 weeks, as you can imagine I was pretty ill, then one day I asked one of the consultants that I knew because I had worked with his wife in one of the clinics if he would just check this lump that I had had for a few months , I was told and believed that it was a cyst. He said what ever it was it should not be there so he refered me to the breast clinc and low and behold it was cancer, the next step was to have surgery and I had a wide excision lumpectomy with lymph node removal. I was 49 years old and it was just before Christmas.. Ten in Janurary I started radiotherapy and chemo both at the same time,. The chemo was given every third week for 6 months and I was pretty well out of it most days. The warfarin nurse used to visit me and had my checks done whilst in bed as I was too weak to go to the surgery, I am on this medication for life as it was my 2nd blood clot, I was only 17yrs old the first time. Anyway when I couldn’t sleep my neighbours would see me washing our car at 5am and shout out of the widow to go back to bed. One day I was seen cutting down bushes in the back garden, then I would go to bed and sleep for 6hrs..that is how it affected me, also I had mouth ulcers and then one too many infections due to a fall and had cellulitus which was eating away at my foot. I was admitted yet again to the oncology ward. I was given high doeses of antibiotics and monitored around the clock, I was in isolation as I couldn’t be near other people in case I became worse, the funny thing was that I looked very well and it was hard to understand how ill I really was, just like you Helen. I had a fantastic wig and some lovely makeup and it wasn’t until about 6 days later that the oncologist told me that the chemo was killing me off and that we should stop the treatment.. She also told me that I might have had enough to kill any stray cancer cells left in my lymph nodes and that it might have worked.. The surgeon who did the operation told me that if am still here in 10years time that then they would know if they had done the right thing.. I want to tell you that I am now 60years old and have reach that mile stone of 10years.. It was an horrendous Year of my life and I said that if I reach the 10yr goal then I would embrace my 60th year.. I have been widowed for 5 years and I know now that I had to be there for my husband who had cancer of the bladder, he looked after me all our married life, he was 22 yrs older than me and we met when I was 16yrs old and he was 38. We had moved here to Skegness in 2004 and loved it here, I have met another gentleman who is 20yrs my senior and we have had 6weeks in Tunisia. Coming home to the cold I have felt that if I had cancer again I would not now have the strength to fight like I did 10yrs ago and that I would not want to have anymore treatment but the weather is getting better now and my mind is set on fighting again.. What I am trying to say is that it is a very personal choice and although the treatment is horrendous you just have to want to live so as to enjoy the spring lambs and all the nature that is around us, all the trees are finally blossoming and you just have to stop and stand and stare at this wonderful world. I love to talk to the tourists and the watch the little children playing on the sand with the grown ups who for a few days at least they can forget all their worries and enjoy the fresh air. I love to go to the seaside and am lucky enough to be able to walk there in 10mins.. My friend Roy and I take a flask and sit for a good hour just enjoying the sea view and the people holidaying in this lovely part of Lincolnshire and I thank God that I am here to write this for you Helen and your avid followers.. JUST YOU HANG ON IN THERE GIRL.. I will sign off now and if you ever want to talk I am here for you and any other cancer sufferers, Just writing this has helped me as I have never shared my enemy the dreaded cancer so publicly. yours Denise. Sent with love for a full recovery Helen….xx