Private

I’m sorry to hear that you’re in hospital again - how was the weekend and is there any more news?

take care,

MrsDW

Hi Mrs DW,

I am home now, only because I threatened to discharge myself. As I was stable I was allowed home. I would like to say I have had great care but I feel I have been treated very badly from the day I first started complaining of this groin pain in August. There has definitely been delay in treating me which has now lead to permanent damage. My quality of life is severely affected, I am physically and mentally struggling, I can't work. To say I have struggled is an understatement. There have been mistakes even while I was in hospital last week. Some accountability needs to be taken and this is something I will be taking further.

I had a thrombectomy on Thursday but as they then realised my veins are so badly damaged, the pain was unbelievable. I actually managed it while they got the clot out but then I had to be put asleep so they could insert balloons to inflate my vein, all while still lying on my stomach with the anaesthetist holding my head and telling the team the maximum I can be kept asleep is 20 minutes due to how dangerous it was.  As there was limited time, they did not have time to put a stent in my vein. This is something I need done and they were just keeping me lying there in that hospital bed waiting for another dopler and then surgery. I could have been in there weeks. They finally agreed to let me go home and I will be seen as an outpatient.  The final conclusion is that I have severe vein and nerve damage from radiotherapy. As you can imagine this is quite hard to hear and I have very mixed emotions. 

Sorry I didn't have a more upbeat reply! Hope you are doing well.

Summer x

Hi Summer,

I'm sorry to hear about your problems. 

When my husband had throat cancer the radiotherapy damaged his larynx, and he couldn't eat without coughing his heart up. They then did a laryngectomy where they take out the larynx, and  separate the food channel from the airway, meaning that he had to breathe through a hole in his neck and not the nose. He used a speech valve to talk with. It was a lot to deal with at first. He couldn't talk for 4 months but wrote on a board. In all, he was 3 years from his first operation until a full recovery.

Hope that gives you hope. xxxxx

Hi NannyAnny,

Thanks so much for this and sorry for the late reply.I am so pleased to read your husband finally made a full recovery and that does give me hope.

I am back in hospital again still waiting for the elusive stent to arrive. I went for a follow up scan to my thrombectomy last Wednesday and my iliac vein has completely collapsed so I was admitted and promised procedure on Friday but here I am, still waiting. 

I still don't regret having the radiotherapy as my cancer was aggressive and stage 3 and considered not curable so to be told no evidence of disease, whatever the side effects, was worth it. I have been told I am quite unlucky as I have so many damaged veins too small to have any intervention on but hopefully the stent to my iliac vein will help with the groin pain and leg swelling. 

Take care and hope you are looking forward to Christmas. 

Summer x

Hi Summer,

Talking to you does remind me how long you have to wait around in hospital!!! We once worked out in an outpatients clinic how many patients were waiting in an hour, multiplied that by every hour of every day, then each week, and yearly. The result was astounding when you see how ,many people they deal with. But not much consolation when you are stuck in there!!

Hope you are out for Christmas. I'm going to my younger daughters in Essex. Her husband is a very good cook, so I'm looking forward to some yummy food! I try to be fat free at home, but that will go by the board for a few days!!! My eldest grand daughter is now 14 so there won't be any high jinks or early get up from her!!! 

Good luck. xxx 

Hi NannyAnny,

Sorry for not replying sooner. I hope you had a fabulous Christmas, I did, although health has been a struggle up until today, I can finally feel some improvement so I hope it lasts. Happy New Year.

Summer x

Hi Summer,

I've only just got back from Essex at the weekend! Had a lovely time. Ate, drank too much, but it was lovely to have some company!!

Glad to hear you are feeling a bit better.