Feeling low apprehensive

Morning all 

Just wanted to ask a little question maybe advise ? 

As you know I finished radiotherapy  on 24rd December for Maltoma Lymphoma .

Its coming up to 3 months on 24th March , I have been experiencing  neck discomfort especially top of my spine , this swifts around my neck shoulders at times .

At first I was thinking it's a crocked neck but it dosnt seem to be easing off .

Had it for month now , I am going to book an appointment  with the Doctors but wondered if anyone has experienced  this following lung radiotherapy. 

Its difficult to think this is anything  to do with the lymphoma ,when you've  been constantly worried every ache pain is it my lymphoma....

Been unable to continue my yoga because of this. 

This may be a separate issue 

Hope everyone is continuing to fight the fight take every day as it comes , live & love life . 

Mandy

Good morning Mandy , the “what if?” thoughts are going to come round a lot and from my experience, for a number of years

It is all about regaining trust in your body as is unpacked in this great paper. My team will always say that I know my body better then anyone with regards to what is new and it’s good that you have an appointment soon to unpack this.

Although I have been on my Lymphoma journey for over 20 years now the lessons learned over the past  6+ years of the journey when my condition became aggressive and treatment had to become even more aggressive........ is that the winter months are always the worst for muscle pains, my main pain was also across my neck. As part of my first Stem Cell Transplant I had two weeks Total Body Lymphoid Irradiation - this was a challenge

So the basic conclusion I have come to (confirmed by my Physiotherapist) is I was doing a lot less activity over the winter and my body was starting to seize up.

I am now we’ll past the worst of the pain problems but in the early days 2015/16 I was on strong pain meds, but my team also strongly encouraged to go to exercise activities overseen by a cancer trained fitness instructor (at my local Maggie’s Centre but also check for Local Macmillan Support in your area) and push through.

Yes, initially it was hard work, but me and the pain meds kept going, pushing though and after a few years it has worked.

I am no longer on any strong pain meds and any pain over the winter months is very small but great during the summer.

See what your team are saying. Easy fir me to say this but keep on keeping on and keep the end goal firmly in your sights ((hugs))

Thank you I've booked an appointment with doctor today hopefully  can shed some light on this I should have scan appointment  this month then follow up with consultant regarding the outcome of my treatment, if it not caused by radiotherapy  then I need to like you say trust my body I feel that I have an undying health issue like arthritis osteoarthritis  / rheumatoid this is because I get joint swelling in my fingers & often pain in my hip joints .

Anyways thanks again I will pop my pain killers & carrying on regardless

Hi again,

Now your answer sheds some more light.

I was diagnosed with Thoratic & Lumber Spondylosis (Spinal Osteoarthritis) with hints in the Cervical Vertebrae back in 2010 and this has never really been looked at again in any detail........ other pressing health issues took over

I was having Physiotherapy following my second Stem Cell Transplant and left the Unit in a wheelchair so was seeing a Cancer Specialist Physiotherapist for a good number of months.

He did say that there could well be some connection between the treatments I had, the position of my mass in my neck, damage to muscle and nerves, my Osteoarthritis and the months of inactivity all joining together in exacerbating my Spinal Osteoarthritis as well as other muscle wastage.

Exercise did work, yes it took a good few years but little or no pain 4 year 4 months and 14 days post my last treatment.... not that I keep track.

The sign below is everywhere in a lot of our hospitals up North........ so during my second transplant I was 59..... but within 6 weeks I had become 119 

Sometimes is all about prospective and not seeing the answer for the "what if's"

Lets get you on a road to recovery ((hugs))

Hi all,

I am feeling very depressed. 

When I was diagnosed nearly 6 years ago, all my a so called friends dumped me. I don't care about it "it's hard for them", when I needed them, they ran. I can't work now due medical conditions. My mum and dad are the only ones who stood by me and they still are.

I was given the all clear 3 years ago which is great but I panic over every ache, pain, itch, bruise, etc., I ring my GP nearly every week and he tells me everything is fine and it's normal for me to feel this way, but it's not, this is not me.

Before I started my treatment, I was told everything would  return to normal but it hasn't. I am so happy to be here and thrilled to be given the all clear. I cry a lot.

I am lonely and I don't have any friends, that's the truth. 

My GP has referred to a psychiatrist and I am waiting to hear from him.

Anyway, thank you for reading this.

With kindness,

Hello LisaCardiff, welcome to the community, tho I'm sure it's the last place u want to be.

What u say sounds very familiar to so many folk here. I'm glad your GP has referred you to a psychiatrist n hope an appointment comes through quickly. In the meantime, you might want to look " in you area" to see if there's a Macmillan or Maggie's centre near you. You can talk to someone one to one there. You could also ring the helpline on 0808 808 0000 8am to 8pm, 7 days/ week. Do also talk on line to us too.

Love  n hugs,

Sue x

Hi, I have completed my final round of post-op chemo and my main goal this year is to see Scotland. I think it is part of the healing process, to feel a yearning urge to get back to beauty and nature. I aim to get as far as Glen Coe. Cancer is unpredictable, a cunning old beast, but having goals, no matter how small, give you focus. 

Btw LisaCardiff,

Iv'e just read your profile. You've certainly been thru the mill during the past few years! No wonder you're feeling depressed- I think I would too.

LisaCardiff

Hi Lisa

You just never know where I'm going to pop up.

I'm sorry that things have not improved for you and how you are feeling, I remember joking with you a few years ago about having a night out chilling at MacDs with friends but that seems to have faded into the sunset over Cardiff Bay and you're left with the company of good old mum and dad who are still standing by you  regards to mum by the way, hope she is keeping well as is dad.

You know everywhere we turn we hear all generations saying the same thing there is nothing in the community for us whether it be youngsters, teenagers, young adults right through to my advanced age group and yet others will tell us there is always somewhere to go but where are they so I've had a look at Cardiff for you by going into Macmillans in your area and typing in Cardiff and the first thing I came across was Macmillan Information Support Center who can advise on all manner of things and may have information on local support groups not listed here when you could go along and meet new like minded people and have a chat.

They also have their Knit and Natter group which meets every Monday afternoon 14:00-16:00 in the Information and Support Centre at University Hospital Llandough.

Maybe something for you and mum to do or not!

Then I came across Shine Cardiff. This is a group that holds monthly drinks evenings, first drink on them, where you can meet new people and have a chat, they also have coffee mornings some weekday mornings and have had a bowling evening. Everyone will have been diagnosed with cancer and be in different stages. It might interest you.

Then there's Maggie's at Velindre where you could pop in for a chat round the kitchen table with a cup of tea or coffee or have a one to one with a counselor with regard to your depression and anxiety and even join in a small group with like minded people, the centre may have activity workshops you could join in.

And almost there, there is The Hope Programme (the acronym explains it all) who run courses of varying durations to help people come to terms with life after cancer and may be organising courses in the Cardiff area at some time

And I have reached the final post with This which might also be of interest.

I know the above will not be everyone's cup of tea but there might be something there that catches your eye and you'll give it a go and maybe meet new people and find a new interest.

But back to the beginning your local Macmillan Information Support Center might just come up with something different for you.

Forget the old friends I'm sure that in Cardiff there are a bunch of people just waiting to welcome you into their mist for outings and activities just be careful you don't stray too far from the city limits you might end up arm in arm with Nessa and Stacey!

You know that you can always come to the forum and have a chat, we have new members joining daily, to rant, rave and vent your feelings by doing what we are all good at doing by letting off steam, I know that I don't need to say to you that no one here is judgemental we're just a bunch of very supportive people who share our every day stories with each other.

As a last resort you know that there is always one person on here who is always up for a bit of a chin wag and you know who he is!

Don't bottle things up come in and have a chat there's always someone about amongst the insomniacs in the groups.

Please remember to give my regards to mum and dad.

Ian

CC

Hello Ian,

Thank you for your beautiful reply. It is great to hear from you and fun to see you pop up. Next time I am at the hairdressers, you will probably pop up in the seat next to me, ha, ha, ha.

You found out a lot of support groups in Cardiff, thank you. 

The Macmillan Information Centre is at our local hospital (The University Hospital of Wales) which is about 5 minutes from where I live but it isn't manned. It's like an indoor porch with a lot of leaflets. 

I don't fancy Maggie's for a couple of reasons. The first reason, it's next door to Velindre cancer hospital and that place fills me with terror, I hyperventilate at the thought of that place. And I want to get away from all cancer related stuff. I can't cope with everything I have been through and I can't bear to hear the other people's stories. I don't mean that horribly, but I can't.

However, saying that The Hope and The Shine Cardiff sound much more up my street. I will email Shine Cardiff later today and thank you. I don't know how you know about these groups.

I will give mum and dad your regards and I am sure they will give their regards to you too and laugh when I tell them about all the Cardiff groups you told me about.

Mum hasn't been very well. She is on oxygen for 16 hours a day. It's because she has had 5 heart attacks and somehow this has given her a hole in her lungs. But she is slowly getting better and dad is moaning, so he is fine.

I hope you and your family are good and you are getting up and doing the shimmy whenever the needs take you.

Thank you for being there.

Love from