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Wellness during and after treatment

Sam61

What do you do when the anxiety strikes?

Sorry this is going to be another long moan, but sometimes it feels like this forum is the only place where people listen and understand how I feel.

Since diagnosis, I’ve turned into a real worrier about the slightest aches and pains and it can make me very anxious. But I don’t know where to go for answers or reassurance.

I’m currently 3 weeks post chemo/radiotherapy and 3 weeks from my next scan so there’s no regular contact to talk to. And I’m concerned about being seen to be a time waster.

When I had chest pains during the chemo, on 4 separate occasions I saw the duty oncologist, called 111 who sent the ambulance, ended up in A&E for 6 hours, and saw a locum GP who said there was nothing he could do. All the tests and obs were fine but I still had pains.

I finally saw my own GP who said the pain and tightness was caused by chest wall muscle inflammation/ infection. So now I know what it is I can deal with it and stop my heart racing by breathing exercises (although I can’t yet stop them coming on).

My latest concern is leg pains. I had the pains running down from my buttocks before diagnosis and tingling legs from the start of treatment, not helped by a heavy fall onto my backside after week 1. I think it’s nerve pain and sitting around too much, and two doctors have told me they don’t think it’s DVT. But that doesn’t stop me Googling symptoms or making myself anxious. I’ve mentioned it to my GP who said it will take time and given me stronger painkillers. The last two days it’s got worse with pain in my groins, calf and sole of foot but feels ok when walking. But I can’t keep calling 111 or going back to my GP.

I worry when I know something doesn’t feel right and I don’t know what it is. And sometimes I feel the doctors are fobbing me off and are fed up of my moaning (I know I would be!) but they might be missing something. I never used to be like this but the cancer diagnosis has really affected me - my husband hardly recognises the person I’ve become.

So I think I’ve got health anxiety. I’ve tried to get counselling but when I called my EAP they were all in a meeting and called back when I said I would be unavailable. I’ve been referred to the oncology psychology service but that takes 8 to 12 weeks for an appointment. But does counselling help when you want reassurance about symptoms? All the helplines also say that they can’t help medically.

We don’t have Maggies or similar centres locally and I’ve not found any convenient local groups,

Does anyone else feel the same way? What do you do when the anxiety strikes?

Clancy

@Sam61 , hi, you are not a moaner or over anxious. You have been diagnosed with cancer, one of the biggest life changing experiences anyone can endure. I would persevere with the oncology/psychologist regardless of the 8week wait.
I have had counselling, four sessions, which was great. Each January since diagnosis I develop low mood, last year I was put on Fluoxetine but they did not suit. I have booked myself in for hypnotherapy so that I can put my worries to bed, Because I feel that I have deep rooted issues that need resolving. It will cost me £125 for two hours. I will let you know how I feel afterwards, I am willing to try anything. Sending positive healing.:x::x:

Hans

@Sam61 hi there. Yea, I think all the above advice is good. Basically, it boils down for us to keep exercising; keep fit as possible; no-one understands although they say they do (except for people on here); keep trying and keep busy. I decided to learn German (for example) which totally absorbs me and takes my mind off to Germany and far away from the present. I learned using Youtube and Facebook and its been great and cost free.

I much prefer Kalms Lavender Capsules which work for me very well to reduce my anxiety level and improve my sleep (they take a few days to kick in and cost £5 a box in Boots - you may check them with an internet search. I tried doctors meds once and they doped me out and were the very devil to get off - so I am very wary of medicines for anxiety.

We are all up on the biggest stress life can throw on us -- you are among friends here - My wife had loads of aches and pains when on chemo (the chemo works for a couple of months afterwards) especially her legs and feet. I recall that keeping warm is a big one and then keep active helped her. We were never given any Red Flag symptoms that needed urgent help - - perhaps it would be worth getting a check list for these: you know:, sudden inability to breath easily, or chest pains etc. Then it would give you something to go on. I would ask to doc or onc for this list.
All my sincere wishes brave lady
Hans

Sam61

Thanks @Gypsy @terri m @katietr @1234annie @Clancy @Hans for your replies and advice - it really does help.

Part of my problem is I was expecting and hoping to feel ok by now - 3 weeks post radiotherapy - and getting back to doing normal things. And while I’m much better than I was, the last few days I’ve felt quite rough again. I know things are going on in my body but because I don’t know what, I don’t have any control. I generally get off to sleep ok but wake up in the early hours which is the worst time for worrying.

I will definitely try to get some counselling now. I don’t really want to take more drugs if I can avoid it, so might give the Kalms a go first.

It’s not just the anxiety - I can feel I’m losing confidence. I’ve started working again, which helps, but I’m doing it from home and really do not want to go back into the office. I go out for a walk every day with the dogs, but can’t go alone and am only up to one easy route. I’ve not felt up to going out with friends, to the shops or even driving since I started treatment. Not sure now whether this is because I am ‘ill’ or if it’s all psychological.

Cancer hit me when I was at a very low ebb after 18 months of family stress, including losing my brother and mother. We just felt we were getting our lives back together when I was diagnosed. I’ve still got a long way to go with treatment- even if it’s straight forward and all goes to plan. So I need to be in a better place to face it.

Thanks for ‘listening’. Lots of love to you all.

Clancy

Lots of love to you too @Sam61, what a traumatic time you have had. At least you are trying to make progress and that is the main thing, baby steps is one of the mantras of this forum. MacMillans do counselling as well, do you have an office at your local hospital? They could ease you into the counselling before the oncology psych appointment comes through. Big hugs.:x::x:

1234annie

The effects of radio go on long after it's finished, I think they don't scan you for a while as it carries in working. Loosing confidence is totally normal. I lost it in myself and my body, both things (I felt) had let me down. The best thing you can do is ask for support and help from your nurse, that is what they are there for. We
are here 4 u too. My phycologist appointment was a 7 week wait but it was still worth doing :x: :x:

Calleyh

Does it help to know that I fell on my backside a couple of months ago and I had lots of twinges, aches and I said ouch a lot? I send you a big hug on top of all the words of support above.

Sam61

Hi @Calleyh yes that does help thanks - I’ll save this to re-read at 3 o’clock in the morning! I said ouch every time I climbed on the radiotherapy scanner bed - they don’t come with cushions. 🙂

Rob Richardson

Hi @Sam61, I feel I may be of some help to you here, however I can't put your 'mind at rest' or simply 'cure you of anxiety' over a quick text. I can however, tell you a bit of what I know, and if you want to, we can take it from there (feel free to message me privately if you prefer, I don't mind either way). I am guessing from your bio that you have had pre-opp treatment? Anyway, regarding the anxiety, its very easy to start feeling physical symptoms from thoughts, such as "why does that part of me ache, something must be causing it" or "what caused that twinge, what's happening?" And the list goes on. If you think/worry so much on a particular part or area of your body, coupled with the knowledge of a diagnosis, your mind can go into overdrive, where you can incessantly think the same terrifying thoughts, (also known as rumination), which in turn causes lack of sleep, irritability, difference in personality etc. These lead to physical symptoms due to lack of appetite/nutrition/socializing etc, and can really mess you up. I say all of this, from first hand experience. I ended up having constantly psychosomatic symptoms (where you think you are ill, then become feeling it) and the least thing would trigger me. On one occasion I had a movement of wind or gas within my abdomen (I was 19 at the time, I'm now 34), and I was convinced it was linked to the tumor I had when I was 6! I'm not going to say "its all in your head" Sam, as that was what I was told (in a nutshell) but all of mine started off from a completely random out the blue panic attack one day, and as id never had one before, afterward I was constantly questioning and evaluating EVERYTHING that went on with my body. I believe that when the body (specifically the brain) has a shock of some sort out of the blue, it can go into this hypersensitivity state. If you cut your arm, got a fright but could physically see what happened, its very easy to rationalize what happened, whereas with cancer (or brain tumor, angina, basically anything that can't be seen) its a different story altogether, and its almost as though there has to be something physically visible that we can see or do, to stop the thoughts from racing and kind of jumping from one "conclusion" to the next. I'm positive your doctors etc aren't fobbing you off, they'd be struck off if they did, and I completely emphasize with your situation. Sorry for long drawn out message, very hard to put it all in text, but message me anytime and I can break it down into smaller more detailed bits till you find your reassurance. Take care. 😊

DianeS

Hi @Sam61 I can totally relate to how you are feeling. I’ve always been quite an anxious person and was actually taking Citalopram prior to diagnosis. I really thought having cancer would push me over the edge, but I have tried many different therapies to help keep it under control. I get aches and pains, and always think they are cancer related, and I feel very anxious if scans or blood tests are due. Through mindfullness and yoga I have learned how to keep my feelings under control for most of the time. I have been disease free for just over two years, but the fear of it coming back can be almost the same as having it. The best therapy I ever had prior cancer was cognitive behaviour therapy. This changes your thought patterns and for me it was amazing. Please never think you are moaning, living with cancer is not easy, but I am stronger than I once was. The forum is a great place to chat about your concerns, but also to let you see that we are all in the same boat, you are not alone. Hope you can find some suitable way of dealing with your anxiety. Thinking of you love Diane :x::x:

Calleyh
Quote from @Sam61:
Hi @Calleyh yes that does help thanks - I’ll save this to re-read at 3 o’clock in the morning! I said ouch every time I climbed on the radiotherapy scanner bed - they don’t come with cushions. 🙂

Lying still for several minutes on the scanner with a sore backside. Yep, that would have been hard. I had to be helped out of my car seat. A liitle more for 3 am.!

george1960

When your on Chemo or Radiotherapy both have side effects Could it be the side effects your suffering from and also you making anxiety worse with the time you have worrying about CT treatments etc. Stop the Google thing as there is so much rubbish on the various sites if you have to us a site use the NHS site only.
If your worried contact the emergency number given by your oncologist team.
The treatment can sometimes be hard and yes your going to experience some symptoms but it's how you deal with it pannick or just get on with it is think most of us get on with it that distraction can sometimes settle the previous worry away.

Start exercising, thinking positive and get on with life.

George :x::x:

Rob Richardson

Oh, and @Sam61, please if you can, try not to google your symptoms. That will probably make your anxiety worse as even if you type in symptoms of a common cold it'll end up telling you you've got the bubonic plague or something! 😊

Sam61

Hi @Rob Richardson That’s exactly it. With my chest pains, I just kept being told basically your ECG, bloods etc are fine, go away, but I still had a tight chest. Once my GP gave me a reason for that pain, I could deal with and can generally stop the racing heart rate and calm myself with breathing.

The list of red flag side effects was the worst thing ever for me as I was in a permanent state of anxiety looking out for and thinking I had them. It didn’t help that someone gave me a newspaper cutting about someone dying from Capecitibine just before I started chemo - on Capecitibine. I was in the wrong place to take the tablets from the start and really struggled.

When there are actual things you can check yourself- like taking your temperature - it’s fine, you feel in control. It’s when you wonder if it could be ... but there’s no way of knowing that the anxiety starts.

george1960

@Sam61
Hi i am on Paclitaxel and Carboplatin and it says your loose you hair, so every day i check my head 😀 and it's still there what i have of it BUT did i check my pubic hair no and guess what it's gone so what i am trying to say you may suffer some things but not all of them all you can do is try.
When you feel anxious take your mind away from it do something's differently from what you do normally.
Yes this cancer thing is a challenge but you have to give it a good fight otherwise we would all give up and people need hope.

Hope you have a good night
:x:

Hans

@Sam61 - good morning and yea I have a darn good idea how you are feeling about this illness. The lavender pills are very good at reducing stress and anxiety (they are well researched) and you will sleep right through the night well. I found them in our Asda. They took me six days to kick in fully and I am amazed how well they well they work. Now and again you may smell of lavender. The pills are my best find on this cancer journey!! I always was tough - now I am prone to worry and its my wife with Cancer - not I.
Hans

angepange

Hi @Sam61 . Yes, me too. I think a lot of us can relate to how you feel. @Gypsy , who is now a very dear friend, and a couple of other forumites, were my lifeline at the time when I was gripped with anxiety a few years ago. Please take advice from these lovely people who have been in the same position. Lots of love. Angie :x::x::x:

Gypsy

Dear @Rob Richardson , ditto but in me, it led to a complete mental breakdown, truly dreadful and with utterly horrific thoughts and self-loathing that I won't describe but think Hell and you'll not be far wrong and partial delusions etc that came to a crisis at which point it was suggested that I needed to be in hospital. So that was the person that none of my family could recognise or reach. It all started with cancer anxiety (as others are describing on here) which led to this obsession and inability to break free by any of the strategies suggested above (and I did all of those). It was a mental illness which eventually, I could neither self-help nor control (and I never ever thought anything like that would happen to me but it did and, as they told me in hospital, it can and does happen to anyone and no one is immune). I would not have recovered without the hospital, that is for sure but I had to put in a lot of effort too and it was the most difficult thing I've ever had to do in my life so far.
Good news is that I got completely better and that, as I say, is a miracle so far as I'm concerned. I don't believe that I'll ever go back there again and have learned to live completely in the day and I do not have any cancer anxiety now, not about cancer especially. It has already cost me way too much. So I'm sharing it on here just for information, no other reason and if it can help someone else then all to the good.
Love to all on here who are experiencing anxiety, especially you @Sam61 as this is your thread. :x::x::x::x:
Thank you@angepange.:x::x::x:

Sam61

Thanks everyone for your comments and advice - it really did help.

Yesterday the pain was just an ache so I didn’t panic about it at all. And in the afternoon I distracted myself with reading about cancer-fighting diets which made me feel there was something I could do to take back a bit of control- whether they work or not.

My problem is that when I feel ok, I don’t follow up on seeking counselling or making doctors appointments, so next time the anxiety strikes I’m back in the same position. This time I definitely need to do something.

Thanks again :x::x:

jandals

I also would recommend calling the Macmillan helpline you can talk to a nurse there through your symptoms and your anxieties. It is my partner who has cancer but I was already suffering from anxiety and depression before (I know think I had nothing to be worrying about then!!) and the helpline and counselling helped me. I also take 5 HTP which helps calm my thoughts and helps with moods and with sleep and I believe is all natural too (but. Check with your consultant just in case) x x x you are having a very normal reaction to a very traumatic situation. I actually think when we had the news, in the week after our smell changed - (we shower regularly!) but there was something about our natural smell that I think might have been fear! Mmm you can call me crazy...

Adnyl

@Sam61 I've nothing to add to the excellent advice above ... other than some virtual hugs from me to you {{{{HUGS}}}}