67.8K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Slow recovery

4 REPLIES 4
Jaybro
Member

Re: Slow recovery

Hi Lou

My balance problems started with chemo, almost immediately. I now walk into walls and door jambs and furniture and, when I’m walking, I tend to tread on my own feet. It’s a loss of some proprioception. Sometimes I feel there’s a small hollow/vacuum inside my head if I move quickly. I was referred to Neurology (there are other nerve issues) 11 months ago and told there might be a bit of a delay. No one could foresee Covid! Have you considered asking to have it looked into? It’s also a symptom of fatigue. 

My rheumatologist suggested using YouTube as an introduction to pilates. I did try the Haven but it presupposed a balance I didn’t have. I have found some promising introductory videos, including seated pilates which is ideal for me as I can’t get off the floor easily. I can also strongly recommend Colin Hamilton’s Qigong Workout (search for Colin Hamilton Tai Chi Leeds). He’s been my tai chi instructor for over 20 years and it’s proving a great help for gentle stretching and balance. 

All the best with your continued recovery x

LouJP
Member

Re: Slow recovery

Hi

I wanted to respond on this thread as I totally understand the feeling of lack of aftercare once treatment has finished.

Apparently there is an NHS booklet they are sending me - radiotherapy finished on the 11th Sept - we are now 17th Nov and no sign but to be honest I have taken control of the after care myself after having a mini meltdown (and was offered anti d's by the GP on the basis of an online reach out for help - no telephone call etc., I haven't taken them) - so from there I reached out to BCN, lovely chat to one of the nurses, spoke to Macmillan, have been onto the Breast Haven website and have finished the Moving Forwards course with BCN and currently on a Cancer Coach weekly zoom.

I can't fault the NHS at all (I am receiving treatment for lymphoedema so I am grateful for that although really once diagnosed, it is all about self massage/management) but the same story keeps recurring which is there is no aftercare once the course of actual treatments has finished.

I was 54 when diagnosed in January (now 55) and yep at times feel way older than that, I sit down to take off my trainers after a walk and think, how do I get up off the doorstep now and I am a dancer but lots of spinning post chemo just isn't happening - almost feels like my sense of balance isn't great - I don't do pilates but wonder if that's something I should try but having never really done it before, not sure a zoom class would be ideal as a first timer and of course covid stops so much f2f stuff.

But I am thankful to have received my treatment, many didn't and am very grateful for the interaction on this forum as at times, the cancer journey feels like the loneliest journey I have every taken.

Love

LouJP xx

lizandsarah
Member

Re: Slow recovery

Thank you Jan for helping me to feel I'm not alone. Unfortunately I was treated in the local hospital and my surgery has been equally unhelpful with support. The lymohoedema clinic told me they have no capacity to give me the treatments that have helped and to pay privately! She didn't even know how much they cost - £70 session!  So I'm just plodding along as best I can, but it does overwhelm me. 

I will have a look at the haven online, unfortunately the nearest centre to me has been closed down due to their covid funding crisis

 

Thank you

 

Jaybro
Member

Re: Slow recovery

Oh how your post resonated with me. I’m just not the woman I was. I’m a bit ahead of you, diagnosed September 2018, but the only thing I’ve not shared in your experience is the prolonged antibiotics and  lymphodoema. I was lucky to be referred to the oncology rehabilitation physio and she made sure of it. But I feel I’ve aged by 20 years (and I was 67 at diagnosis!).

I feel like a walking, talking, breathing mass of side effects and the outrage, as far as I’m concerned, is the absence of holistic aftercare for cancer patients. We get the treatment, we’re passed on with the assurance that the symptoms we’re experiencing will ease off and that’s it - we’re in the hands of volunteers, often very experienced in their one field but no one with any medical overview. Unless you persist. I was treated in a regional centre of excellence and they only have the service for children, so heaven help anyone treated in their local hospital. Rant over.

My poor oncologist is trying to fathom out all my problems. It’s not the anastrozole - I’ve had two periods off it with no easing of symptoms. I say my poor oncologist but I speak to a different one every time. I do at last have one taking an overview, with referrals to every department except obstetrics as far as I can tell. But departments are unwilling to see people with something so vague when there are real emergencies to be dealt with in the current pandemic. So far I’ve been told by rheumatology that the chemo attacked my tendons (I was underweight during treatment and it hadn’t much tissue to choose from) and left me with sarcopoenia (muscle loss) which is causing the joint pain. Cure? Exercise. Hmmm.

So, you’re not alone. I too have experienced depression and I recognise there are some similarities. I do wonder if that’s not a factor in my fatigue, which can hit any time. If I can strip a bed, that’s it for the day. I have exercises from rheumatology, community physio and OT, all done over the phone which I can’t get my head round. But I can’t break through the fatigue to do the exercises - and how do I do my knee and thigh exercises when every bone in my feet hurts so much? So then it all turns inwards - I’m not doing enough to get myself stronger, I’m letting my husband down, I’m enjoying being the invalid. None of that’s true and I catch the thoughts before the damage is done but, quite frankly, post-treatment recovery is full-time work for me and I am awe-struck that you can hold down a job. 

The fact is, we have to treat ourselves as we would treat others - with kindness and compassion. We aren’t like this on purpose. We all have our own unique physiology which will respond to treatments in our unique way. It’s not effing fair but it is what it is (ugh, sorry for that cliché). We will get through it and, vaccination allowing, we’ll soon be energised by being in fresh company and different scenery. Meantime, if you had a good breast-care nurse, then give her a call and talk about how you’re feeling. The emotional is as important as the physical, after all. If not, try the number above - the nurses are very reassuring - or ring Macmillan which has a broader overview. I find some of the classes offered online by Breast Cancer Haven really helpful, especially the EFT. Even if that doesn’t work, I’m in zoom company with other women laid low by breast cancer (none of the I-sailed-through-it brigade there). It’s comforting in a perverse way. 

I hope you’ll get other responses. Reading between the lines, there are many of us here who feel abandoned to our fate (and our perplexed GPs). And sorry for focusing on myself so much. Take care but take some action? Jan x

lizandsarah
Member

Slow recovery

I'm 23 months post diagnosis, had multiple surgeries, sepsis, chemo, rads, hormone therapy and lymphoedema which is infected, so there is a year of antibiotics in the mix! Not much going on! Had to change hormone therapy due to the severity of side effects, improved but still get pain every day and awful night sweats. Fatigue is quite a problem as well. Weight piling on since ovaries removed despite diet not changing. 

I've not been able to return to the nursing job I love and have spent months waiting for redeployment and now have a desk job for the next six months.

I just feel as though I've never got my mojo back, everything in life feels like a battle, I'm not depressed (been there, treated and recovered post treatment). Every day feels difficult and I finally now look like me, just with shorter hair!

My best friends tell me not to worry, but I seem to have lost all my motivation and confidence since this diagnosis arrived out of the blue. All the ladies I have met along the way seem to be getting on with life, but mine seems to be lying down, not even standing still!

Am I alone in feeling like this? Or is it more widespread? There's no support from hospital once active treatment is done. I'm missing the old me who had lots of energy, never stopped and got things done, but had fun along the way!