So I have been in remission from NHL large mediastinal lymphoma for nearly two years in June. On diagnosis I was given treatment within a week and told that starting a family may be out of the question or could be difficult. At that time I was devastated but trusted the hospitals decisions and didn’t have time to have any eggs harvested. I had a test pre chemo to see how my fertility looked, and the results of that was promising. During chemo I had a monthly injection to keep my eggs under wraps if you like and reduce the blood flow so that not all of them were damaged.
I am now like I say a few years on and have been enjoying life and finding our new normal, we had expected conception to be difficult but started trying anyway. Three months (only three!!) we are very happy and over the moon to announce our dream came true and are expecting our first child in October!
I hope by sharing this news it will give many women in my situation hope, I read many blogs when I was having treatment and recovering and posts like this gave me that extra positivity and hope.
Seeing out 2016 with a post.
2016 brought with it another heap of memories, fun, laughter, much less tears and normality.
Remission for 1 year and 6 months, and approaching two years since my chemo came to an end.
From a cancer point of veiw things have still been hard, so many people have been less fortunate than me and although I’m truly greateful for my good health I feel the pain that others go through and continue to try and help others where I can and raise money when I can.
Positivity and love from family and friends and my incredible nurse is what keeps me going.
Life is a gift and I’m trying to make sure I live it to the full and continue to appreciate every day.
My New Years resolution is to continue setting goals and achieving them, I firmly believe you can do anything you set your mind to and my drivers are work and my bucket list which seems to double each year! A cure for cancer would be amazing but I can only keep up my small contribution by donations,fundraising, volunteering and blogging which will continue always.
I don’t know what’s ahead but I know I am lucky to be able to see a path xx
So i have had my blog for two years now and started my blog because of a terrible disease deciding to take over my body.
That terrible disease is CANCER, being diagnosed back in September 2014 soon made me wake up to something I hadn’t really fully understood before. The realisation soon kicked in that actually so many strains exist and not enough treatment and cures are available.
Along my way I have followed some truly inspirational people who have all been through so much,and have definitely helped me by sharing information through blogging and also helped many others through fundraising.
Two weeks ago the lovely Roweena Kincaid passed away after a long long fight with cancer and this morning I have learnt that Anna Louise Swabey has too passed away.
These two ladies blogs were my go to when i was sick and they showed me that life is precious and that although this path we have been on is tough you should love life and take each day as they come and be happy.
Anna’s blog was set up so she could-
- Raise awareness
- Raise money for Brain Tumour Research Campaign
- Support others
- use it as a coping mechanism to let out her feelings
She raised over £80,000 in two years, her blog supported so many people in a similar situation, and I can only hope it did help her with each day sharing and hearing from others. She gave her time to charity and others selflessly to raise awareness and she definitely made a difference in her few years fighting for the BTRC.
Rest in peace you beautiful girl – I never met you but feel like I have known you my whole life.
Roweena – well anyone who has watched her programme or followed her posts will see that she was infectiously lovable and crazy lady. She really showed cancer that it may have her body but it certainly didn’t have her heart and mind. I would encourage anyone with or without cancer in their lives to watch her programme Before I kick the bucket on BBC Wales.
Roweena you showed me how not to let cancer take away who I was and to see past the cancer and live life to it’s fullest. You really were the true Wonderwoman xxx
Sleep tight you beautiful ladies and know that everything you did really will continue to help and support so many.
My love and thoughts go out to Anna and Roweena’s family.
Anna’s blog – https://annaswabey.wordpress.com/
Annas just giving – https://www.justgiving.com/fundraising/InsideMyHead
Roweena’s facebook page – https://www.facebook.com/lilmissbucketlist
So it’s time to sign off this is my last post… I’m really hoping my blog continues to help others in a similar position to me, but I’ve decided to hang up my blogging hat for a little while to continue to focus on loving and enjoying life.
Writing this blog did lots for me, it informed family and friends how i was, it helped other people, but most of all it really helped me. It was my release and saved me on many occasions from loosing my temper, getting upset and just helped me share and also gather information.
I may be back from time to time to share the odd bit of news, and if I feel I have something helpful to share but as i said above I need to focus on the here and now and making a happy future for myself and not looking back for a while.
Anyone reading who is just about to face something life changing should always remember to have hope and surround yourself with amazing people.
I couldn’t have dreamed of getting as far as i have without my AMAZING PEOPLE (I love you all dearly and you all know who you are).
So a hair update is about due I think- finished chemo last Feb and my hair is well and truly back. I lost my hair two weeks into my first chemo session, I had some great wigs and head scalfs but feeling very happy it’s returning back to normal.
Had it dyed and cut yesterday and it’s the first time since I lost it that I was actually excited when I left the hair dressers ❤
This sounds quite silly really but it’s a massive step forward. Feeling very greatful xxxx
This is a great doc about after cancer…what happens next.
Not as easy as it looks but achievable in time 🙂
So when I got sick I had a seriously bad cough, it made m physically sick and was over 12 week period. Today I woke up feeling pretty rough and have a cough, an absolutely normal kind of cough, but took me straight back to that time. Nothing some tablets and my duvet won’t cure but for a few minutes was a worry.
Remember being ill is a normal part of life and worrying won’t do any good. Always thankful of each and every day, thinking about the lymphoma is slowly subsiding to minimal time a day now.
Last year I packed away my hair products and today without realising my dressing table looks like it used to, Bobby pins, hair bands, straighteners, hair dryer and even a small bobble. Funny how packing these things away was so painful but it’s all become normal again without me even realising.
Feeling very thankful
Through blogging and joining groups on Facebook I have read so many stories of other people’s experiences.
One in particular is Rowena Kincaid, she did a programme last year about bucket lists – before I kick the bucket. She was told she wouldn’t see her 40th birthday and she has defied those odds. She is always posting great things on Facebook raising awareness of cancer, the symptoms and side affects, she shares information some people never would she is truly an inspiration. She has a new programme coming out soon but follow her and watch her programmes they are so eye opening and so brave.
So today was my seven month check and I’m very glad to be in remission still.
These appointments are routine and I guess normal for people looking in from the outside, but they mean so much more to me.
The nerves kicked in early January, and have built up over the month, it’s such a relief to not have to go again for three months.
I’m in a good place though to be fair, I’m slowly making progress with the hair growth, back at the gym, going back to uni, making loads of fun plans and not feeling so full of fear! I’m just taking one day at a time and looking forward to the positives only.
A whole years passed since chemo and that’s just crazy in itself! Still have 100% faith in my hospital medical team and they fill me with more and more reassurance as time passes.
To anyone just starting treatment I’d just say keep going, be as positive as you can and always have hope, I lost a year and myself but have found a stronger person at the end of the treatment, it’s tough emotionally but you can get through it xxx
It is a year today since i had my last chemo, i am glad to say I am in remission and working through life after cancer.
But I never forget preparing my bag for chemo, there are things you take with you that can help make the day a little easier. I just wanted to share this for anyone who may be starting chemo that may need some tips, i picked things up as i went along, speaking to people on clinic days, making chemo friends and reading other peoples blogs.
I was on a 7 hour chemo treatment, so my day in the hospital seemed much better when i went prepared.
Not been writing much of late, not had too much to say, been busy enjoying Christmas with family and friends.
My 2015 didn’t hold what I dreamed of pre-Lymphoma, but it was a good year and those dreams are just being held on to for future years.
No resolutions for me this year, but i am going to try out a memory jar in the new year. Starting on New year’s day i will fill it with good things that happen, laugh out loud moments, memories on special days, and happy memories made on those spontaneous days. Next new year I will crack open the jar and remind myself again of why life is so precious.
2015 doesn’t need a jar – my year started with some chemo and rads, but is ending on a high. Thanks to family and friends my year has been lovely.
Lots of things that made me smile in 2015-
Last chemo, end of radiotherapy, hobbit house getaway, Centre parcs, 30th birthday celebrations,Somerset trip, spa, Dirty Dancing, cocktails, back to work, Christines 30th, Cats 30th, Egypt, Laura’s wedding, Maria had baby Jack, Theo was born, became his proud godparents,ditched the wigs, first hair cuts, hair dyed, made over £700 at Macmillan coffee morning, Mum turned 60, Christine had baby Henrie, trip to Camden, Centre parcs spa with some of the girls, Zoo trip, murder mystery, Rome, Gemma had baby Olivia, Christmas with all the family, and I saved the best till last REMISSION!
All these things were wonderful but the people who factor in all of these things are the best part – Our family – our friends – new babies (love having cuddles)- colleagues, and of course – My hubby (cheesy but true he is my positive ray of light) – I wouldn’t be the person I am without having these people in my life, the support every one of them give is a blessing in itself.
I Will be continuing with lots of fundraising and volunteering in the new year, so keep and eye out and feel free to join in ❤
Happy New year all – see you in 2016!
- Its not about the things you have in life it’s about who we have ❤
- I’ll forever be thankful for the people around me xxx
Just a quick check in to wish everyone Happy Christmas, what a crazy year it’s been. So glad to be back at work and getting my new normal back.
Learnt lots since last year but the main thing is to be greatful, for every day, minute and year I have with my wonderful family and friends. So delighted to be in a different situation to last year, but also so aware of how different life could have been.
Happy Christmas fellow bloggers and thanks to everyone for reading xxx
And Always a thanks to my amazing friends and family for supporting me through so many emotions this year.
2nd Review – 100 Questions and answers about Lymphoma
So i’m onto my next book review……
This one is much more statistics and facts rather than someones journey with cancer. Its really good for anyone recently diagnosed with Lymphoma specifically and also someone who has had it or is currently going through treatment. It is very easy to read and understand and answered all my questions about Lymphoma. It covers – treatment plans, bloods, biopsy, lumbar puncture stages of lymphoma, types of infection, risks, remission.
It can be daunting reading books about your condition and I appreciate some people would rather just go with the information your DR will tell you, but if you like to know all the facts like I do, then i really would recommend this.
Still going with my meditation, mindfulness techniques and of course my blog.
I think Andrew thinks i am slightly mad sitting and deep breathing and listening to strange audio tapes to help with anxiety and stress.
The hospital have advised 40 mins a day to be spent on myself – meditating or doing mindfulness techniques. I have mentioned the apps before but here they are again-
I use a mixture of these daily. Meditation doesn’t work for everyone but it seems to help me.
So last night I was lucky enough to take calls on the children in need call centre. I had the most amazing night supporting such a great cause ❤
From a small child I have loved children in need – I especially remember going to see Santa in Birmingham with my brother and cousins and using my money to buy a huge pudsey bear. I watch it every year and donate every year.
Once my shift was over I came home and watched some of it on the tv. Many children need support for many reasons – Abbie’s story really stuck with me as she lost her father to cancer and her mother is now battling terminal cancer. I have shared Abbie’s video below-
I’m feeling very proud to have helped and thrilled they made so much money last night to continue to help children in need.
Lost Hair – Oct 14 = tick
Rocking a wig – October 14 = tick
Hair growing – Feb 15 = tick
Full head of hair – June 15 = tick
Hair dyed – July 15 = Tick
Long enough fro a quiff – November 15 = tick
Bob -November 16
Shoulder length –
So I used to always get ill before cancer and so far been really well since the treatment, but this week I have felt rough but at least it’s just a bug.
I’ve done the grumpy stage, the worry I have some lymph nodes enlarged stage, but now currently in the curl up under duvet and rest stage. The main thing I think i keep forgetting is that I’m not superwoman and if my body says slow down I should, not good at that bit though, hate cancelling my plans and caving in to a crappy cold but my immune system is wrecked and feeling like I did yesterday maybe could have been avoided if I had listened to myself. Sleep was my medicine.
This time last year I was in my cucoon that is home in the middle of my second chemo routine avoiding anyone with a sniffle.
Very greatful that I’m here and 4 months clear – maybe slowing down is my answer but just want to enjoy every dayXXXX
So as you are all aware, I am and always will be very grateful to Macmillan.
I recently did a coffee morning to raise money for them, raising a lovely sum of £700.
I have been looking at other ways to help and today have signed up to volunteer as a book reviewer! This for me is great as I LOVE ❤ reading books of any kind!
What does a book reviewer do for Macmillan?
Macmillan book reviewers have had personal experience of cancer. This may be as a patient, caring for someone with cancer, as a family member, or health professional. For some books for children, reviewers with experience of working with children, e.g. teachers will also be considered.
Why do they need people affected by cancer and health professionals to review books and audiovisual resources?
Peoples comments about books and audiovisual resources will help them to advise staff in public libraries and cancer information centers about the most useful and appropriate books to stock. They will also help others affected by cancer to make a more informed decision about whether to buy or borrow a particular resource.
Feeling very pleased to be adding value by commenting and reviewing on books. I am also amazed by the many different volunteering options that are available to people to join in on. I think I have always assumed that volunteering generally consisted of working in a shop or selling things for charity.
I have linked below to the Macmillan volunteering page-
So may not have the body but Deffo have the fight power of superwoman.
Three month check a month late today and very happy to say all is well! Over the moon! 1 down 7 checks to go before the two year mark!
Thanks again as always to friends, family and colleagues, always at my side with support and especially my super man drew xxxx
So I thought I’d take my blog and make it a bit more all round rather than just cancer updates. So I’m starting with phone apps.
I’ve had some anxiety of late and been using some tools to help, books, websites, breathing techniques. And now some apps. One helps with breathing techniques, the other is an all round happy tool and the other is an nhs recommended app! I love them all and depending on how I feel I use all of them throughout the week.
Hope this is of use to someone.
If I had to choose one favourite it’s Deffo the happify app.
So where do I start, been a while since I posted. What a few weeks we have had- started with cats 30th celebrations which included –
- An amazing murder mystery
- Centre parcs spa! Incredible
- Trip to Rome! Awesome!
All of the above were such fun and more lovely memories made with friends!
Then we had mine and drews Macmillan coffee morning where we raised over £650! A crazy day in the Morley house but a great way to raise money and socialise with all of our amazing family and friends- thanks again to everyone who came along, baked, donated and enjoyed themselves!
Married my soul mate three years ago yesterday and love him more today than ever, he has been my rock for the last 12 months and life just wouldn’t be the same without him by my side xxx
12 months since hair fell out and it’s back! Xxx
Egypt – finally a holiday on the beach it’s been two years and I just cannot wait! I was a person who would count down from a month before but since cancelling a few holidays I’ve left the excitement to a few days before!! Eeeeeek!
Very anxious to be leaving the country but know deep down I’m fine! I have been in remission three months and have my first check up at the end of the month.
Love and smiles
been to the pshycologist today, been seeing her now for a quite a few weeks, it’s the best thing I’ve done after my treatment. I am more focussed, have less anxiety, much calmer in general. Not seeing her till after my holiday to Egypt now but continuing with my mindfulness techniques- I have a great book through Amazon which has loads of 10 min techniques, colour therapy helps still and other techniques she gives me. Anyone struggling should definitely consider it, nothing wrong with talking through things.
1 YEAR – 12 MONTHS – 365 DAYS – 52 WEEKS – SEPT 14 – SEPT 15 – Large B Cell Mediastinal aggressive Lymphoma
Diagnosis came – 4 September 2014
Treatment length – 7 Months – R-CHOP Chemo every 21 days X 6 lots – Radiotherapy X20 blasts over a month.
Off work – 9 Months, September 14 – May 15
Remission date – 17th June 2015
Back at work full time – 02 September 2015
First Three month check – 16 September 2015
What a difference a year makes, I have outlined those key dates for anyone at the start of a battle, if someone had told me that in exactly a years time I would be back at work full-time and enjoying life again I would have thought they were lying.
It wasn’t easy but when you have to fight you will, one year on and my hair is back, I am working again full-time, finding a new normal, exercising, enjoying life, and taking every day one at a time.
Remission brought lots of relief to our family and friends but brought with it some trying times mentally for me, but seeking help through the amazing team at the hospital has helped no end, knowing help is always available is a great support to me.
went to London today with Drew and the dads, late daddy’s day trip to Wembley
God parent duties tomorrow at church to meet the vicar,for little theo, very proud to have been asked and look forward to teaching him lots as he grows up!
Nearly full time with work now so feeing extremely shattered but determined not to moan as I am so happy and appreciative of life and the opportunities it is bringing to us both. Pshycologist appointments are getting further apart but would reccomend them everyone who may need help after cancer, best thing I’ve done after treatment. Not long till my first check up after remission but staying positive 🙂
Firstly i just want to congratulate Matt and Laura on the wedding of the year yesterday, Andrew and I had a lovely day and wish them all the love and happiness for the future.
A year ago yesterday we attended another beautiful wedding of Fay and rich – happy anniversary guys.
I was quite poorly back then but had no reason why, a few weeks later the reason I had been so poorly was discovered – mediastinal large B cell lymphoma – in other words cancer. I have had a tough ten months but yesterday I laughed, smiled and cried a shed load of happy tears and joy. I haven’t laughed so much in so long. I felt confident with my hair and just had a great day no worries at all, it is great to feel that sense of happiness again. I’m carrying a few extra pounds and yeah my hair isn’t quite how I want it but happiness is the main thing and I truly was that yesterday 🙂
The night before started it all off wonderfully, a trip to see the bodyguard at the theatre with mum- her favourite film. Love making new memories and making mum smile. Hope she loved her 60th birthday pressie xxx
SO from the title you can see where my latest blog is headed.
After a fight with treatment and kicking its ass I genuinely thought this next bit, the happy remission part world be a walk in the park. Oh how I was wrong.
Some may read this and think “God I’d just be so greatful to be alive and well” and I am genuinely am all of those……
But over the last two weeks it been tough, mentally tough, hit me from nowhere and scared me a lot. Frightened, anxious, feeling out of control and utterly fed up. Never even through treatment have I felt that negative and clouded with fear and just a wreck of emotions. Thankfully after a trip to the doctor and talking to friends and pshycologist I’m out of that cloud and can see much clearer again.
People who have experienced cancer warned me, my Macmillan nurse warned me that the remission part early on can really affect people, I genuinely thought no I’ll be fine! So anyone going through what I did for the last two weeks then don’t fear this is normal, doesn’t feel normal but now I can see that it is. Speaking to professionals may sound silly but does no harm and I feel so much better even after a week. Fear is a strange thing and can make you Ill if you let it eat you up. I know I have more bad days ahead but I also know I would not be human if I wasn’t scared sometimes.
I’m doing more things to try and relax – colour therapy which is very relaxing, reading, listening to some voice clips on an app called don’t panic, learning at work, talking to people when I need to.
Think I’ve mentioned this before but I’ve been trying to find normal life again but I need to shape a new normal now as the old normal has gone, but nothing wrong with that either really what is normal????
Hope this doesn’t come across too negative as that’s not how it’s intended but if anyone has or is feeling like this may be able to take something from this post.
So lifes good, although remission is still a word i haven’t got my head around, I am 100% grateful that I am lucky enough to be in remission and will never take it for granted, but on the other hand being in remission is harder than being in treatment.
When i was notified of the cancer i told myself that I needed to go full steam ahead deal with it, do as the doctors say and hope to come out the other end with a positive outcome, obviously i didn’t feel like that every day and I did have bad days physically and mentally.
Now being in remission is wonderful, another chance at life and one to be taken seriously, but in another breath it is so hard – I’m hoping that how I’m feeling will wear off and slowly normal will just be normal again but at the moment everything going on around me is normal but i just don’t feel normal. Im petrified that the cancer will return and it doesn’t mater how much i tell myself to be positive and forget about it I just can’t not all the time.
Andy and I are happy we are planning holidays, nights out, family times, fun times, I’m working, I’m cycling, reading again, concentration is better, chemo brain is wearing off slowly, things are good, i just hope that how I’m feeling is normal for others and I’m not just being a paranoid silly sausage.
On a very happy note mum turned 60 at the weekend – we had a lovely time and was great to spend quality time with everyone, a sleepover at mums on Friday and a lovely meal out on Saturday.
I came across this list of well meaning but sometimes frustrating comments which I think many people will identify with. I read some of these when i was have treatment and at the time hadn’t really thought that much into them, but reading them now it really does. Friends and family mean well obviously and everyone deals with hard situations in different ways.
1. “That’s a good cancer to have.”
There are no good cancers. There are definitely some which respond better to treatment than others, and I’m allowed to observe that as the patient, but you are not.
Please don’t tell me how lucky I am. I may not be in the humour to hear that.
2. “Cancer isn’t as hard as it used to be.”
That’s funny, because it felt pretty tough when i was going through it, sleepless nights, feeling overwhealmingly sick, looking in the mirror and not seeing yourself in the mirror just a shell.
3. “I’ve always wanted to shave my head.”
Losing your hair to chemo is not the same as shaving your head because you thought Natalie Portman looked cool in V for Vendettta.
4. “You look like Natalie Portman in V for Vendetta!”
No, I don’t.
5. “We didn’t think you’d be up for it.”
Don’t assume we’re not able to do things just because we have cancer. Keep inviting us to stuff. Sometimes we won’t be up to it, but sometimes we will, and we desperately need to leave the house. – This happened lots
6. “You’re so brave.”
We know you mean well when you say this, but we don’t feel brave. Bravery is something that happens when someone chooses to take on something scary. There was no choice involved.
7. “Have you tried…?”
Unless you have a piece of advice so stellar that you think we literally can’t go on without it, please don’t make suggestions about our treatment. Yes, eating kiwis may be an effective way of combating constipation in your everyday life, but if the industrial-strength medical-grade laxatives an actual doctor has prescribed for me aren’t working, then adding more fruit to my diet probably won’t either.
8. “If anyone can beat this, you can.
”Because people who die as a result of cancer didn’t fight hard enough?
9. “Remember, there’s always someone worse off than you.”
10. “I know how you feel.”
No, you don’t.
11. “At least you’ll have loads of free time now.”
I am not on holiday. I have taken time off work because dealing with cancer is literally a full-time job.
12. “Congratulations! You’re done!”
It’s not necessarily over just because we’ve had our last scheduled bit of chemo or radiation. Reaching the end of treatment can be a really scary time.
…So what should you say?
“I don’t really know what to say.”
It’s OK for you to be honest about how you’re feeling. We don’t expect you to be an expert in dealing with this really tough situation.
“I’m sorry you’re going through this.”
Sometimes a simple acknowledgement that things are a bit rubbish right now really helps.
“Do you need a lift home from chemo?”
Specific offers of help are much better than general “I’m here if you need me” type statements. We’ll actually take you up on them, and they will genuinely make a difference.
“Have you seen…?”
Film and TV recommendations are invaluable for days when we can’t get off the sofa and feel like we’ve exhausted Netflix.
So thought i’d post something different tonight.
Having my hair dyed for the first time since its grown back, do i go for the fun purple/grey look or stay with normal or blonde?
Thinking its only going to grow out if I don’t like it, should take the opportunity to have a bit of fun with it.
so I have not posted much of late, it’s been two weeks since the news of remission, and I’ve got to say it still hasn’t kicked in. I’ve spent so long focussed on this tumour that now it’s not inside anymore it just doesn’t feel real. Still feeling very anxious and worried but I know with time that will fade.
Increasing my hours at work gradually but it’s good to be back, another girl has been doing my job while I was away – she did an amazing job and couldn’t have asked for a better person to do it. Was never awkward with her and her leaving this week was strange.
I am also wig free – started with work where I had lovely compliments and now don’t wear wig out anywhere, feel like I’m getting looks but think it’s paranoia to be fair. Just thin at the front and not ready for hair accessories. Went to get a new hair band with Drew- not for now as I look like a wally but he thought it was for now his face was a picture when I put it on!
Other news my friend has had baby Theo yesterday. our beautiful godson. We can’t wait to meet him. Congratulations Jodie and Chris- blessed with a beautiful little boy 8lb.
Trying slowly to get my fitness up and since getting my bike I’m getting slightly addicted 5 miles 3 days or 4 days a week. Doesn’t sound far but it’s enough for me 💦🚴. I even went out in the rain! That Is not an old Lisa thing to do lol 😀
One thing cancer has taught me is to look after what you have. My body has taken chemo and radiation so it can handle a bit of exercise!
Been with Andy six years this week – love him to death – best 6 years! My rock xxxxxxxxx
Had to edit and add a photo of the beautiful Theo –