Living with Lymphoma

I'm Rachel, 28 years old and I had Hodgkins Lymphoma. This blog is to document and to record what it's like to be diagnosed and treated for this type of cancer. Feel free to ask me anything.Please help me raise money for Cancer Research UK -

[livingwithlymphoma]

Today's world cancer day and I've been thinking a lot about all the incredible people I've met in "cancer club". Those in remission, those who are still fighting it and the ones who aren't with us anymore🎗 My cancer experience is in my past (for which I am very grateful and also very aware could change any day) but the experiences will always be a part of who I am, it's still in my head every day. I will again this year be taking part in a Race for Life event to try and raise funds and awareness for Cancer Research.

[livingwithlymphoma]

Ive just today come back from the doctors after having an ultrasound down on a lump in my arm. The doctor told me that the lump is a lymphoma but that its not cancerous and never will be. Can they actually know that for sure from just an ultrasound or should I be seeking a different opinion?

Hi! Where is this lump? Lymph nodes can swell for a number of reasons, most commonly when we are fighting some sort of infection as they are part our immune system. I would say it confuses me that they have come to that conclusion after only an ultrasound. Have you had any other tests at all such as a blood test or other scans? I had an ultrasound early on but it took them several more tests to decide what it was.I would keep an eye out for other things, have you lost any weight recently, been sleeping more, sweating at night, getting more colds and feeling run down, and also just keep doing self examinations under your arm pits and around your neck. If you have or develop any of those I'd go for a second opinion. I'm not where you are or if you pay for healthcare, but it was a procedure called a Fine Needle Aspiration (FNA) that showed my doctor's that my lump was cancerous, if you wanted to look into one of those. (After the FNA they still needed to do a full biopsy to determine type of cancer) I hope you get reassurance soon and that your doctor is right and that it's nothing to worry about!

[livingwithlymphoma]

Hello, I was diagnosed with Hodgkin's Lymphoma and was treated with 5 rounds of chemotherapy and 2 weeks of radiation. I am still experiencing the side effects of neuropathy and it is quite painful. Did you experience nerve damage/pain? If yes, how long did it last?

Hey! I didn't experience the pain your describing personally but I know a few people who did. In terms of late effects, my fatigue was pretty bad - and I didn't feel I was up to full energy until about 10 months after finishing treatment. Sorry I couldn't be more useful, but I do hope your out of pain soon!

[livingwithlymphoma]

hi, I don't know how concerned I should be right now. my boyfriend has had a lump in his neck that I discovered exactly a month ago. it's not growing but it's not getting smaller. it doesn't hurt him. last time I saw him he looked really thin so he weighed himself and he lost 13 pounds in one week. are these signs of lymphoma? he is going to the doctor next week. what will they probably do/say? thank you.

Hey. Sorry to hear you are concerned about your boyfriend. Whilst a lump that isn't painful, and doesn't go away and weight loss are both sights of lymphoma, I would try not to worry as they could also be signs of many less serious problems! In terms of what to expect; they'll ask a series of questions and may have an idea of what it might be, but if they are concerned, or simply can't figure it out themselves, they will make a referral (usually 2-4 weeks) to a specialist - perhaps a Ears, Nose and Throat specialist (ENT). After that they could do a series of tests and scans. Like I said try not worry cos there's plenty of perfectly innocent reasons for those symptoms, and statistically it's more likely to not by lymphoma! However, and my best piece of advice, is if you are concerned DO tell the doctor, say your concerned it may be serious, and if your not happy with what the doctor says, get a second opinion. Never let a doctor fob you off because ultimately you know your own body better then they do, and know if something is wrong. Hope the appointment goes well.

[livingwithlymphoma]

Last call for sponsors for this years race for life! All for Cancer Research Uk Www.justgiving.com/racheltitherington1

[livingwithlymphoma]

So today marks the 3 year anniversary of when I walked into a doctors office and was told I may, and ultimately did, have cancer. I can't believe it's only been 3 years, because in so many ways it feels like a life time ago. So much has changed, including my attitudes, perspective and outlook, and not just from what I personally experienced, but more significantly, it's because of the people I've got to know over the last 3 years because of it. The past 2 years I've been made sure to fill this day with happy things, and it's been kind of my annual day to celebrate how lucky I've been. But when you've watched people go through similar experiences and not make it through the other side, or know people who are living with a potentially limited future, it feels selfish to 'celebrate'. About a year ago I got introduced to an amazing guy, one of my best friends best friend - two of the nicest people you could speak too. Through talking about our mutual experience with cancer, I made a friend, and he told me he hoped to join me as "one of the lucky ones". And I wanted that for him so much too. I don't think I'll ever understand why someone so lovely, and so loved had to go through so much pain. Even though we were only really Facebook friends, I think about Gary, his family, friends and especially Hannah every single day, and what cancer took from them all. So all I can really think of a valid way to 'mark' this day, is to ask you all to do what you can to support those living with or after cancer, or support cancer research so that one day we don't have to have "lucky ones" and "unlucky ones". Sign up to do an event, set up a charitable direct debit, take part in the race for life even if you don't fundraise and just walk it - trust me, your presence is support enough. Donate some clothes to a local charity shop, check out volunteering options, or just simply call someone who needs it, talk to a friend in Facebook, don't bury your head in the sand if somebody is ill. Don't miss out on your friends lives. And if you can't do any of that, just enjoy your day, take pleasure in something small because it's the small pleasures in life that make it, and don't take anything you can do today for granted. I once read something that seems appropriate, it said happiness is the spiritual experience of living every moment with love, grace and gratitude.

[livingwithlymphoma]

Donating Stem Cells!

My good friend and housemate Joe is, as I type, under going a stem cell donation so he can help someone with cancer though a charity called Anthony Nolan. On their website they explain what they do; “We match incredible individuals willing to donate their blood stem cells or bone marrow to people who desperately need lifesaving transplants”

”Every 20 minutes, someone in the UK is told they have a blood cancer such as leukaemia. For many, a bone marrow or blood stem cell transplant is their only chance.They need cells from a healthy person – with the same tissue type – to replace and repair their own damaged cells. About 30% of people in need can find a suitable donor in their family. But the other 70% rely on a stranger to save their lives. Anthony Nolan helps that 70% find those precious matches.”

Joes Donation:

I asked Joe if he would explain the process, so you can hear form someone who has actually done it! Here he explains in his own words what he has had to do and how he feels about it; “I've been a blood doner since uni, I signed up with my good friend Rach who runs this blog. After she got her diagnosis an important part of her treatment was a bone marrow biopsy. It helps replenish the immune systems of people going through chemo. When I went to my next blood donation and saw the option to have a sample sent for testing to be added to the bone marrow donation register, I gladly ticked it as someone must have for Rach.

About two years went by and I got a call saying I was a potential match for a patient who would be starting chemo. I was excited for the opportunity to help someone out! They then sent out a kit if vials that I took with me to the hospital. Some more blood was taken for compatibility tests and basic screening. You then send them off in a prepaid envelope. If you're going to do this DON'T do it on a Friday like I did. Because the samples will go off over the weekend and you'll need to do it again!

I got the call from Anthony Nolan to say I was the best match and they arranged my trip to London for a full health screening. It was all paid for and the nurse, Jackie, was super nice and showed me round and explained everything that was going to happen. It was also cool to get a clean bill of health.

The donation dates were booked and again everything was paid for; trains, hotels and food. For 4 days prior to the donation you get injections of GCSF (granular-site colony stimulating factor) or Granocyte is the brand name. It makes your bones produce more stem cells which then circulate in your blood. It's basically a hormone you make already. You can feel a little achy when you're on it. I also lost my appetite and didn't want to sleep as much. But it's totally tolerable and I could still work and everything. It's 100% worth it.

I travelled down to London last night and I am, at the time of writing, hooked up to a centrifuge called Kevin. They insert a cannula in one arm and a needle in the other - the same as you'd have at a blood donation. They put them both in with skill and I hardly felt a thing. If the machine filters enough stem cells today I shouldn't need to come tomorrow but can still use my free hotel!!

10/10 would recommend” Thanks Joe! As you can see it’s a fairly straight forward procedure, albeit a little time consuming (he does have to sit for 4 - 5 hours whilst ‘Kevin’ harvests the cells!) but it could save somebody life, and he’s said it doesn’t particularly hurt.

What does donating involve?

Peripheral Blood Stem Cell Collection 9 out of 10 people donate their stem cells in a quick and easy process similar to giving blood, called peripheral blood stem cell collection. (What Joe has done above) - Your blood stem cells will replenish themselves within 2 - 3 weeks - are are delivered straight to the patient! The blood stem cells are collected from the donor’s blood stream by removing blood from one arm, running it through a machine that separates out the stem cells, then returning the blood to the donor through the other arm.  Bone Marrow Collection 1 in 10 donors will have their stem cells collected via the bone marrow itself, while under general anaesthetic. This is a more invasive procedure - the blood stem cells are collected from the bone marrow at the back of the hip bone (This is how the bone marrow biopsies of patients such as myself are done). The procedure is carried out under general anaesthetic so that no pain is experienced. The collection itself takes 1-2 hours and most donors return to their regular activities within a week.  ---------------------------------------------------------------------------------------- If you want to like help save a life like Joe is doing, you can sign up by clicking here (with Anthony Nolan) - As Joe mentioned, it took him over 2 years to get a phone call, but there’s only a 5% chance you’ll be called within 10 years! Which emphasises just how important it is to get as many people as possible on the register. You can also do through Delete Blood Cancer UK, who are aiming to register 100,000 new donors to celebrate World Blood Cancer Day this year, which takes place on 28th May! 

[livingwithlymphoma]

Donate to Rachel's JustGiving Page

Help Rachel raise money for this great cause.

It’s that time of year again! I am taking part in my 4th Race for Life event this year, as well as an additional ‘fun run’ that is local to me that also raises money for Cancer Research UK (Called the Doggy Dash for Life, a fun run with your dog!) As always, any and all sonships would be hugely appreciated.  For my 4th event, i’ve set a fairly ambitious target of £250. I’ve never failed to hit 100% of the target I set, and this year I will do whatever I need too to make sure I don’t miss it this year either.  Whilst i’m here, i’m aware i’ve neglected this blog lately. As you can guess, my absence from this blog means everything cancer wise has been going well for me - no issues. I recently had a check up and was told they ‘don't expect to see relapse at this point’ (Over 2 years since finishing treatment/remission!) Which is obviously great for me, but i no longer feel ok celebrating me being clear when so many people, including those around me and my loved ones, are suffering so horribly. It now feels strange to celebrate when others can’t. It feels selfish. Truth by told there’s been a lot of what I guess they call ‘survivors guilt’ lately, and i’ve been wanting to use this platform to vent for the last few weeks, but life keeps getting in the way. When I get chance, i’ll be posting what i imagine will be a very open post, because i have a lot to get off my chest. I’m not always great at saying how I feel about things, at least not openly or online, but i feel like i want too.  Anyway, more on that soon.

[livingwithlymphoma]

My 2014 Second A Day Video (1 Second Everyday)

Towards the end of 2013 I saw a TED talk about recording 1 second videos of your day every day of the year, and at the end you would have a 6 minute video that summed up your year (I didn’t know at the time that there was an app that accompanied this, so this is just a collection that I put together on After Effects on my computer)

A lot had happened in 2013, and I didn’t know what was ahead in 2014 so the concept of documenting the year in short video snaps really appealed to me (being a big fan of video anyway) - i thought it would be quite interesting, and a fresh change with no editing, no filters, no music to evoke feelings, just plain and raw a full year as i saw it (and as a side note, id already decided to do a photo a day challenge as i’d wanted, well hoped, i could see myself getting healthier as the year went on. I’ll post that series of photos as a video soon)

The year, and subsequently the film, see’s a lot of changes; I started the year still on chemotherapy and ended it in remission. I went from being on full time sick, to being part time at work, to being back full time. I went from being in a long term relationship, to being on my own, and then to dating again. I moved house twice, from Huddersfield to Rochdale and back to Huddersfield again. I got my dog, was unable to look after the dog for a while, then got my dog back living with me. I went from struggling to walk up stairs to being a gym member. In short, my life changed completely in 2014 in nearly every way so in an odd way I couldn’t have picked a better year to document. 2014 had the hardest times of my life so far but I guess that’s what makes it such an important year too. Looking back at this, some things that seemed insignificant at the time bring back really strong memories, and granted some of them mean very little to me now. I also like how i can see my nephew get a little bit older as it goes on, how i see every season at some point, how i unknowingly capture what would be my highlight of the year - at the Find Your Sense of Tumour conference, and also see people that i thought would still be around but aren’t. It’s crazy

I left it over a year to watch these back and put the video together because at then end of 2014 I was more concerned with moving forward rather than looking back, but now at the start of 2016 I can watch it knowing confidently that everything that happened that year simply shaped me, and there are plenty of good memories too - and with that in mind, i’m going to be making a 2016 one!

[livingwithlymphoma]

I always thought giving blood and being and organ donor were great things to do, life saving and so easy (giving blood doesn't hurt or take long and well, we don't need our organs when we die do we!) So I found it quite difficult to be told I can't give blood ever again or be an organ donor because of the cancer. So when I die, my body is pretty useless. If you don't have any medical reasons to not be, why not sign up to be an organ donor, to give blood or to donate bone marrow. These are all such life saving l, amazing, noble things you can do with your good health - I know I would if I could - you get to be a real life super hero!

[livingwithlymphoma]

September has been Blood Cancer Awareness month. I won't write too much as the images speak for themselves. These are just a few that the Bloodwise social media posted that I thought were most relevant for this blog. One thing that's always surprised me was finding out that lymphomas are the most cancer in "my age group" yet barely any of my friends, or me, had even heard of it. And if you don't know what it is, how can you be aware of the symptoms? - swollen lymph nodes (lumps and bumps, particularly in the neck, armpits, groin) - night sweats - fatigue (feeling tired more often) - lymph node pain when drinking alcohol - unexplained weight loss Just one of these symptoms could be an indication something is wrong, and whilst is always more likely not going to cancer, should always be checked by a GP just in case

[livingwithlymphoma]

Race for life 2015 ThankYou to everyone who helped me smash my target this year and help to raise £530 for Cancer Research Uk! It means so much to me and allows me to feel like I'm giving back, so again, thankyou. I did more running in the lead up to this then I'd ever done, and did manage my best time for an event (can't remember excact time but around 39 minutes, I think last year was about 42). My personal best at the gym is 36.30 so I didn't beat that, but I was still happy. Those times may sound rubbish but they are getting slightly better and better over time and that's what matters to me. I'll never be the fastest or have the most stamina but my aim to just try improve slowly but surely. I feel so much healthier in myself then I did 6 months ago and especially 12 months ago. From the pictures you'll see I also did a talk again this year (I think they struggled to find someone!) so that was pretty nerve wracking (again) but also an honour. Roll on next year!

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Representing Willow I've been so bad at updating this blog lately... But I have been up to a few things! First I'll mention how a few weeks ago I went to Liverpool on behalf of the willow foundation to collect a cheque from two lovely ladies. Chris (centre in the picture) had raised £1000 for willow in memory of her friends daughter Karly (Karlys mum is on the left). Both woman had been affected by cancer but were lovely, positive people. I got to talk a lot to Karlys mum, who is just one of those people you wish all the happiness in the world for. It was fun to wear the purple shirt and be presented the cheque on behalf of willow (having benefitted from a "special day" from the charity myself) , but it was talking to these two that made the day special for me. It's always interesting and touching to hear others stories. For those who don't know, Willow provide special days for seriously young adults in the UK. I only found out about them through a social worker at the hospital, so if you haven't been told about them but think this may apply to you, just google Willow Foundation! :)

[livingwithlymphoma]

Hey I was curious about your symptoms prior to diagnosis? I've been worried due to the bruising I've been getting all over my thighs, arms, and feet. I'm not one to bruise easily. I'm tired and anxious. Swollen lymph nodes in my groin, night sweats. But my cbc came back normal and my doctor seemed just fine not figuring out why I'm suddenly tired and bruises without anemia. I've never had a steady Doctor so I'm scared I should be pushing more to find out something...what do you think?

HeyI have to say I didn't suffer any bruising of any form. My only symptom was one very enlarged lymph node on my neck, and looking back, I had been very tired. Both bruising and swollen lymph nodes could both be attributed to any immunity issue. Have you had a doctor feel the swollen lymph nodes? If you really feel the doctor hasn't properly diagnosed you then I'd either push them for more answears or try a new one. I had never had a steady doctor (having never been poorly!) and was lucky to take my swollen lymph node to a doctor who told me he had a speciality in Ears Nose and Throat, so I think different doctors will pick up on different things, even though in theory they should all be the same! I'd not worry too much but if you feel something is wrong then push to find out what it is, no one knows your body better then you.

[livingwithlymphoma]

[livingwithlymphoma]

One week today I take part in my 3rd Race for Life. Thanks to people's generosity I surpassed my original target and I'm now just short of £400, but id like to raise as much as possible. If you'd like to support the vital work that Cancer Research do in finding more ways and better methods of treating every type of cancer, and would like to do it through sponsoring my race, you can do so using the link attached. Every little makes a difference. Thanks :)

[livingwithlymphoma]

Once again this year I'll be taking part in the Huddersfield 5k Race for Life in support of Cancer Research. I joined up to the gym in January and have managed to get last years 5k time of 46 minutes down to 37 minutes! Which I've been really happy with. And I've got 8 weeks to keep trying. If you'd like to sponsor me and support cancer research please use the link above :) any amount really does make a difference and I appreciate every sponsor. This is a small thing I can do to help give back to a charity that I have benefitted so much from, so please help me to help others :) Thanks! Rachel