I’m really struggling at the moment and finding it really hard to cope, alternating between panic and depression. Things are moving in terms of PET scan done, heart scan booked for Monday but the fear and the “struggle between the ears” is huge. My lymphoma was found in my left nostril - had procedure with ENT surgeon on 31st July but I was pretty asymptomatic other than that. Now I am panicking about my lower back (tender, probably too much time spent in bed and sitting around) and pain in sinus which tends to have a mucus build up now the lymphoma mass has been removed. When you’ve had a cancer diagnosis, it feels like it’s open season, as if you haven’t been given bad enough news.
My fiancé is not coping - he copes by being on the go all the time and taking over, presumably to feel some control. We should have been on holiday in Portugal this week and part of next but he’s chosen to go back to work. I don’t blame him but it’s left me feeling quite lonely, although a friend is driving over from Surrey today. She’s supported another friend through this at stage 4. Very strange. I should say my fiancé is very keen to attend appointments with me. He’s a wonderful man and there’s always that guilt that your loved ones are suffering too.
I do like to see the posts with great news - your good outcomes bring hope to all. If anyone has any top tips for keeping mind occupied and staying “in the moment” please let me know. I am going to try some art later - it has helped me before in times of stress.
Hi Gill JulesJJ the space between our ears although small, can truly make navigating this journey very hard.
We have signs everywhere in our Heamatology ward and clinic and it’s so true as at one point I must have been 99 rather than 59 and it’s so true that the less you do the longer the recovery will be and the more aches and pains will develop.
Your fiancé will be doing what he needs to do to get through this - this is a classic coping strategy but good he wants to be at appointments as a good understand helps a lot. My wife worked all the way through my treatments but did attend appointments as it was imortant for her.
I am a very focused person and there is not much that will knock me. I always looked for the good in every new morning, I totally accepted that I had no control over the treatment part of the journey so why stress and lose sleep about something I can’t control…… for me it was all about dealing with whatever came along with a full understanding that my team were on it and had a plan and even when things went bad they were all over it with a new plan,
Its important not to let your cancer define you but you control the battle between your ears….. I set at least one goal for each day, if I achieved it great if not there are other days but importantly we rewarded ourself for every step in the journey even the steps back the way.
We made plans for when we were out this temporary bump in the road was behind us….. my bump took rather longer than normal to navigate but I am thankful that there were treatments available to deal with my type of NHL and indeed get me into remission back in Sep 2016 for the first time in over 17 years and it was great that my consultants were proved wrong when thy told me I would never ever be in any long term remission.
I am living the dream and give it time and so will you ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Thankyou as ever Mike. I love the troosers poster! Definitely need to do that. A walk in the sunshine with the dogs was soothing yesterday so will do the same after dinner. I always set a goal that I get up for the dogs and do their breakfast at 6.30. I have a responsibility to give them normality and it keeps me grounded. A bit of an understatement about your “temporary” bump in the road - I celebrate the fact that you rewarded yourselves for each step on the way. I need to channel your courage and positivity. I’ll get there - can’t keep me down for long.
Hi Gill, just to add to Mikes good advice, this may have been said before but try to focus on where you can make a difference, those things out of your control or things that are fact will not change, so Chanel your energy where it will help you most and help you be ready for treatment and then cope as you progress through it. We all worry about that first session and everyone will tell you its never as bad as we feared and its stopping that fear from dominating which is a challenge, so keep yourself busy and distracted and with dogs that should be a lot easier.
You will find your way and it will become more straight forward once you get in to the treatment cycle.
thanks for this. I’m ensuring we’re both eating good healthy food (organic as far as possible) and maintaining a good sleep routine where possible as it makes me cranky if I don’t and my mind is at rest. I just want to know there is an effective treatment plan and I will be able to ride that storm so first consultation is going to be key. My cancer is very rare the way it presented which does give me concern but my hospital has an oncology teaching facility and I know I have a team rooting for me and great support here.
I think like a fair few the diagnosis come as a surprise. Personal I really didn't feel ill and all I had symptom wise was that I was becoming really sensitive to things like vinegar. I visit to GP and an x-ray the same day kicked things off fairly rapidly.
I have no idea why but my lowest point was going for the first PET scan but that was before I knew it was lymphoma and initial diagnoses was potentially a lot worse. Getting things arranged in my head took a while probably after the second cycle of treatment before I was comfortable with things. It was not overnight but gradual as you learn about the treatment, the effects, and going through a couple of cycles it's a big learning curve.
It is manageable though but it did seem slow and tedious at the time but is now just a fading memory.
thankyou for sharing your experience- that is so very strange. So glad GP clearly on the ball.
I’m very glad it’s fading into the past for you.
I can totally relate to everything you said! I’m 50, had a routine op in April to remove an ovarian cyst, Fallopian tubes and ovaries due to my long standing endometriosis, op went great, no issues. As usual the tissue was sent to pathology and that’s where my story starts! Completely out of the blue I get a call on the 4th May - you’ve got cancer. Panic!!!
PET scan revealed stage 4, by the time I had the scan I’d started to get visible lumps in the jaw and groin, before they appeared I felt great, no symptoms whatsoever. Absolute total shock.
Between being told I had a ‘blood cancer’ and then waiting for my haematology appointment for a proper diagnosis was the worst part of it - I couldn’t sleep, eat, think straight. My worry was the impact all of this was going to have on my boyfriend (only been with him since July 2020) and my elderly father who’s 84. I’ve kept most of what’s going on away from my Dad as he’s a worrier but my bf has been amazing and it’s strengthened us even more.
I think once you get your treatment plan and get started you’ll feel lots better, I know I did.
I’ve had 4 cycles of R-chop up to now. It’s very doable, trust me it’s ok. I expected to feel like death warmed up, but apart from some constipation, nausea, tiredness, etc it’s fine. I’m managing to work (I work from home so that helps), still taking my dog out daily and having my much loved bottle of wine on my second and third weeks post chemo!
If I’m honest the worst bit was losing my hair, that upset me a lot, but I’ve got to grips with that now and got some fab wigs from Amazon,
I do try to stay positive, I think I’m partly in denial (I still can’t believe I have cancer!?!?) I’ve only told a few select people about my diagnosis and I like it that way as I don’t want people showing me pity or sympathy or telling me I’m brave….I’m not, I’m just doing what needs to be done.
I had my half way CT scan last week, I wanted to be told I was in remission but no, partial response and everything is going as it should be - can’t help but feel disappointed but my consultant seems cool about it and is happy with the progress.
Just take each day as it comes, I plod on and before you know it you’ll be into your treatment and focussed. It’s the waiting and not knowing that’s the worst.
My way of coping is to try and physically look like I used to - wig on, make up on, eyebrows on! I don’t want to look like a cancer patient. Also, I try and lead the same life as before but just being a bit more cautious regards picking up infections, but I still go out with friends and even had a bit of ‘session’ last weekend in Liverpool, where I’m from. It makes me feel ‘normal’ if that makes sense.
Anyway, I’ve waffled on enough! if I can be of any support, just reach out. I’ve found this site to be brilliant, so supportive and positive. I can’t thank everyone enough.
Take care, Sarah x
Thankyou so much Sarah. Everything you’ve said is so relatable, including not wanting to tell too many people. Getting “how are you” messages requires an answer. I am so glad you’ve got the support of a good man too!
I have already got so much support from this group - you all ‘get this’in a way no-one else will.
take care of you too
I took your advice and met an old friend today in Kent who I don’t normally get to see too much of as she lives in Harrogate. I felt almost “normal”.
Thankyou for inspiring me
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