Hello Yvonne, 

Poor you, you seem to have suffered terrible complications after your operation. It definitely sounds like you would benefit from talking to a medical expert about this as soon as possible especially as you are in pain and I hope that they can give you adequate pain relief and look into this breathlessness. I know it's the Easter weekend so it might be even more difficult to get seen but I would strongly recommend you ring 111 and mention all your issues and symptoms and see if you can talk to someone urgently over the weekend. If you feel that the breathlessness gets worse and it is an emergency don't hesitate to ring 999. I think it's really important that you don't suffer in silence and talk to a doctor as soon as possible.

Our cancer nurses helpline will be open again on Tuesday 2nd April so feel free to give them a call on this free number 0808 800 4040 - you can reach them Monday to Friday from 9am to 5pm. 

I hope that you will hear from other members of our forum who have been in a similar situation before and that they will pop by and share their experience with you. I hope things get better for you soon and if you have a moment do come back and let us know how you get on. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hello. I have Stage 4 hyalinising clear cell cancer of thymic origin. There is no treatment for this diagnosis. I was initially diagnosed with lung cancer and had 4 cycles of chemo with 30 days of radiotherapy. The cancer spread to my right lung and I had a partial upper right lobectomy in Oct 2022. I still have uncomfortable (but not now painful) neuropathy around the scar, under my boob, around my ribs and on my upper chest. I use DermaCool. It is a lotion that gets rubbed in and makes the area feel v v cold. It is really effective for the neuropathy. I’m in the IK and it can be bought OTC (it is expensive) or by GP prescription. I’m sorry to hear you have such awful care by your GP and oncologist. This must be very frightening. 

Hi Corrie,  you're so brave, it makes me feel whimpy. A little bit about myself, I live in a small village on the edge of the Lake District,  nearest town is Whitehaven. I live in a bungalow with my dog Theo, we have views of the fells, forests and farmland. It's 100 yards from River Ehen, 20 minutes walk to a small lake. I'm so lucky I've brilliant neighbours even though I've only lived here a short time. They help with gardening, walking Theo, shopping and general chores and minor repair jobs when I'm having bad days.  Sue (neighbour) even drives me to Newcastle for hospital appointments  as I struggle to drive that far. I hope you have a good circle of friends and family to help you. Thank you for recommending DERMACOOL  I'll order some online. To date I've spent a fortune on various aids for pain relief none have helped. 

It would be good to have a natter on the phone, if you want to exchange numbers by private message. Usually dog walking before 10 am and out 2pm for about an hour. 

Best wishes  Yvonne 

Thank you Lucie, it's impossible to get a GP appointment, I've rang daily for a week at 8am ,after waiting approx 45 to 60 minutes told no appointments available  and you cannot forward book. If you go to Whiehaven A&E, even by ambulance in nightclothes, dumped there, waited 6 hours then left without seeing medical staff and got taxi home. Several visits to A&E they are useless. I saw GP several months ago, I diagnosed myself and told him I had Conchondritis and Atrophy of intercostal muscles,  he agreed with me and I insisted on the prescriptions I wanted; GP stated he would contact me by phone for  update on medications and update , still waiting for call several months later. Had been complaining about symptons even whilst in hospital for lower lung lobectomy on 17/7/23 and to any medical staff I've seen since, they however have recorded on my file post surgical neuropathic pain of operation scars!!!!!!  Inhospital for 25 days, so many complications on critical list for 5 days.Pain so severe I've taken an oververdose last October and last Tuesday although I st time  vomited profusely then slept for 18 hours, 2nd time just vomited for 12 hours. I despair nobody LISTENS to me. I've spent a fortune on alternative therapies, TENS machine and anything else I find on Internet, nothing is helping. I am not living just existing from day to day and if this is what my future will be then I've had enough. There is no point informing GP of overdoses or how I feel because it uncontrolled pain causing the problems. 

Sorry about being such a whinger but I see no way forward.

Hello YvonneAnne

I'm so sorry to hear about all that you've been through over the past 18 months with your health. It sounds like it's been a very difficult and frustrating time for you and it's clear from your post that you don't feel heard by the medical professionals that you have been involved with. I'm sorry that that has been the case. 

It's worrying to hear that the pain you're living with has been so bad at times that you've taken an overdose of medication. It sounds as if you really do need some help and support with more effective and better pain management. 

You mention in your post that you have a very supportive neighbor, Sue. I don't know how close the two of you are but I wonder if she might be able to support you in making contact with your GP surgery. Sometimes having someone to support us and perhaps act as an advocate for our care can be effective. 

I know how frustrating it can be trying to get a GP appointment. Please do make contact with your GP surgery and ask to speak to the Practice Manager. It may be that you need to explain your situation to them in writing but the Practice Manager should follow up on complaints and hopefully, this will get the ball rolling in the right direction for you. I'd encourage you to disclose to your GP how severe the pain that you're living with can be and that it has on occasion resulted in you feeling so desperate that you've taken more medication than you should. 

I know that Moderator Lucie mentioned our team of nurses will be back in the office tomorrow. You're welcome to call them to talk things through for some advice and support if you feel this would be helpful before contacting your GP surgery again. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I really do hope that things begin to improve for you soon YvonneAnne. Please do keep in touch and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thank you for your reply. I went to A&E last Friday. The medical practitioner I saw was the most empathetic medical person I've seen since op last July. Although he couldn't help me he's contacted my GP to request urgent face to face appointment with my GP, so I'm optimistic that IF they  examine me and LISTEN it'll get the help I need. Medical records repeated state Post surgical neuropathic nerve pain in op scar areas but I've never had pain in that area although 3 scars reopened last October (not by exertion)  Had previously diagnosed myself with Conchondritis and when I finally see GP will tell him I've also Atrophy of intercostal muscles which have been visible for approx 5 months!! But never examined physically by Oncologist or GP. So at the moment I may get some help.

Regards Yvonne