Photo: February 2026 - A helium balloon from a supporter.

Hello Everyone

Karen has now been in Conquest hospital in East Sussex for 2 years and 2 months. 

Karen’s left ear became very painful, swollen and blocked. An ear infection was diagnosed and she was started on antibiotic eardrops for 7 days. These helped, but the ear was not completely better so the course was extended to 10 days.

Karen's temperature has not settled. Karen had not had TPN for 3½ weeks. On Friday the 27th of February, TPN was restarted at a very low rate. Refeeding has to be started slowly and gradually increased over many days because of the risk of refeeding syndrome. The TPN was stopped on Monday the 2nd of March as Karen was having higher temperature spikes. Karen was also feeling worse. A blood culture test was taken from Karen’s Hickman line to check for line or blood infection. The result was negative. On Wednesday the 11th the TPN was started again at the day one rate. It is being increased gradually.

Karen had intermittent severe rib pain, so a consultant asked for a portable chest x-ray to check it was not because of a pneumothorax (punctured lung) which is a risk when Hickman lines are put in. He asked for it to be a portable x-ray as this would be much easier for Karen than going and having the x-ray done in the radiology department. So, on Wednesday the 4th of March, Karen had the portable chest x-ray in her room. The radiographer made putting the X-ray board under Karen more complicated than it usually is and Karen and the bed were moved a lot more than usual. Unfortunately, the radiographer banged the oxygen device on the wall with the bed which broke the oxygen device which caused oxygen to leak out which made a very loud hissing noise. The noise was awful for Karen especially as it was near her head. The nurse could not stop it. Eventually Karen had the x-ray.

The nurse had to get an oxygen canister to be used to give Karen oxygen. A maintenance worker came and checked the oxygen device and said it was snapped off from the wall and that Karen would have to be moved out of the room while he did the repair because it would be too noisy for Karen. He left to get what he needed. It was arranged that Karen be moved to a large empty room on the ward. Unfortunately, the room was very bright because it did not have a blind at the window. After the repair was done Karen was moved back to her room. All of this caused Karen a lot of exertion and made her feel much more unwell. It was a shame because the portable x-ray had been ordered to cause Karen the least amount of exertion possible for the x-ray. Fortunately, the x-ray showed that Karen did not have a pneumothorax.

Karen is still having temperature spikes, still sweating a lot and is still feeling worse than usual and has more pain etc. Karen is still much more exhausted than usual and any exertion, including mental and / or physical exertion such as talking, is more exhausting than usual and makes her feel more unwell.

Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. It is all much appreciated by us.

Please keep sharing this petition and telling people about Karen’s situation. 

Thank you to everyone for your support.

Best wishes to you all.
Heather, Michael & Karen