A year on, whilst in remission, but every day is a struggle

Hi

There is another new member who is also a NHL survivor who coincidentally posted within hours of your message in this group.

Sounds like you two were custom made to have a 'chat' so I have placed a link to your question as a reply to their intro message here.

Fingers crossed you both get something great from bumping into each other.

Take Care, Stay Safe, Eat Cake   G n' J

Hi, 

I'm the person Dreamthief mentioned in their reply. I have experienced the same and would love to share my experiences with you. If you would like to talk about what it's like on the other side feel free to message me.

Hi s and a second welcome to this little corner of the Community.

Living with a blood cancer like HL can be a bumpy ride..... I have lived with my rare skin NHL for over 21 years now.

My diagnosis back in 1999 was "Incurable but treatable but I would never see remission, you will have to live all your life as though you have a chronic illness and it will get you in the end"......sore for saying this, but this is what I lived with for many years.

My story is long so hit Thehighlander to have a look. but after a lot of treatment was eventually told I was in remission back in Septmber 2016. Yes this came as a surprise but a good surprise and I have been partying ever since ;)

I think its good to talk with others who have walked the cancer journey so I am sure that some of the other group members will be along.

In these situations I often post this great paper........ folks will actually come back to me and say that they think that the paper had been written just about them. Have a look and see what you think.

I see that you have joined the HL group. You could post in there but as with a lot of blood cancer groups, once treatment is finished people move on with life and leave the Community.

Happy to talk more about this at anytime.

Hi again , just to add.

The beauty of the Community is the group support not only helps you as an individual but also helps everyone else who comes along looking for exactly the same support.

Keep talking as it does help a lot - it does.

Hi ,

I understand exactly where you`re coming from...

I finished my 6 months of treatment in January 2020 ,after a colon cancer op.. I had a Scan which showed a lung nodule.

I was concerned about that . 2 weeks ago had another scan and good news it was clear. Mentally though its not all over,I have the chemo brain and neuropathy   which people can`t see so they wouldn`t understand . Its not really worth talking to other people about it because they just say you`re better now , get on with your life . Its nice to be able to speak to people who understand . If you look ok you should be buzzing with energy and its not like that !!!

I hope to go back to work soon and I`m sure that will get me back to normality ??? Hope things improve for you and I do understand.

Take care ,

Dykomio/Micky

Hi HodginsSurvivor,

I was so glad to find this group and great to hear that you are remission. It is coming up to 10 weeks since I had surgery for womb cancer and it looks like at this time I won’t need further treatment.

I totally get what you wrote. I went back to work 2 weeks ago, I only told a few people at work of my diagnosis and really don’t want to bring it into my work place. I also told very few of my family and friends, it was fairly easy due to lockdown. 

i am experiencing fatigue but most of the time I feel well. I have signed up to do the on line Macmillan Hope course starting later this month to have a place of support and to process what has happened. I also contacted one of the Macmillan nurses I met in hospital and had a telephone consultation with her on Thursday. It was really the first time since surgery that I felt I could speak freely about what had happened and where I am at. She was great, listened and also very practical, she referred me to the local Macmillan exercise service and to a service here called Restore to help me self manage the fatigue.

I am finding the groups here to be comforting, a place where I can share my own feelings and experiences and share others and be with those that understand.

I am learning to be gentle with myself and asking for help.

Best wishes and hugs

Honey

Hi Hodgkins Survivor,

I too am a survivor of HL, diagnosed in Aug 2016 age 28 and declared in remission May 2017. As you say, everyone's experiences are different but I found such familiarity in your post. The 6 month survival mode and then trying to get back to 'normality' has been incredibly hard for me too. 

When i got the all clear, i felt like i had to prove my worth for survival, make up for lost time, don't waste a moment. I did a course, went back to work, went out as much as my body would let me, bought a house, went on holiday. I tell myself every day how lucky I am and some days i believe it. But some days, the anxiety takes over. 

I have joined this community in the hope of also finding people who have been or are in a similar situation, it can be a very lonely place. As you say it's difficult trying to talk about it because of being better now. 

I'm happy to talk anytime and I hope you are doing well :-) xx

Hi and welcome, I actually did give you a welcome on the New to Community group as well.

The post blood cancer journey can be more challenging than we ever thought it could be. I am 4 3/4 years out from my second Stem Cell Transplant and I can say it gets better.

Did you read through the great paper that was posted earlier on this thread, what do you think?

Always around to help as best as I can.

Hi Thehighlander

I did see that, thank you for the warm welcome! I have read the great paper, yes, and it was a brilliant read. Some very helpful advice in there. I see you have had quite a journey yourself and find your positivity and view on handling situations quite inspiring.

When I came into remission I decided it was time to change my life, I got a diploma in a career I'd always wanted and bought a house with the love of my life. I slowly realised that the burst of confidence to change my life has slowly started to reverse. I turned down a job in my new career path due to fear of losing the financial security of my current job and now find myself falling into a cycle of health related anxiety. ( I cant leave my job incase I get poorly again)

In the last week I started getting some symptoms related to HL and my anxiety has gone through the roof. I frequently get lumps appear and disappear which doesnt help but, as the paper says I'm still.learning how to recognise my body's new normal. I currently feel like there is no escape from the constant worry and I'm running out of distractions to occupy my mind.

Thanks again for your kind words.

Good morning . Oh life can be so complicated and it is often down to us for making it so. The ‘what if’s’ can be a rather loud noise in our heads developing into ever increasing stress and fear.

Having been on my journey fir over 21 years I have had to develop a crap comes along - deal with it mentality. In 1999 I was told “Mike this condition is incurable but treatable but you will never see remission” this was a good way to stay a cancer journey!! But the consultant also said “....and you need to see this as a chronic illness - have you any friends living with a chronic illness if so talk with them”

The resulting conversation with two long term friends who have MS and Parkinson’s was an eye opener and a good foundation to ‘live’ with my condition. The amazing thing was in September 2016 I was told au was in remission and NED - my long term Heamatology Nurse was crying her eyes out as this was a big deal.

Do I still stress and worry? I can go down that rabbit hole rather quickly as I have scar tissue and a lump so do tend to ‘play’ with them until I get a skipper thrown at me by my wife with the words “Don’t fidget with the lumps!!!”

She is spot on as always. We can feed our stress and anxiety rather simply and quickly. This is day 100 since my lockdown started and I have to say we have enjoyed the freedom of not ‘having’ to do the same old same old. Yes we missed our 4 granddaughters but they developed was of connecting including a weekly Zoom singalong with Granddad on with guitar.

The paper is great but Inwould always challenge folks to become proactive after reading through it and using it as a vehicle for change and life improvement.

So get a note book or some sheets of paper and put pen to paper - it is a good way forward.

So a page per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

Always around to help, listen and send caring ((hugs))