Hi
Just wanted to join this community to share my experience as a daughter of a much loved Mum who was diagnosed last June with anaplastic thyroid cancer. She sadly did not have the BRAF gene (discovered this in early August) and so her treatment became one of palliative care. We created loads of lovely memories though for her and for us - 2 family christenings held earlier than originally planned, short break to Norfolk, family boat trip up the Thames, family visiting from abroad etc. Sadly though she died in late November, 2 days after a triple family birthday celebration. She luckily had demanded that a family picture be taken in the garden of us all with her at the celebration. She had enough strength to walk (on my brother's arm) to the garden and then back again. And she smiled in the picture.
I and the rest of the family miss her so so much as she was the beating heart of our family but she was in pain and we at least know that she is no longer suffering.
Of course - it was horrible to see Mum in such pain. Luckily she had a family who researched constantly, who contacted/(I won't lie - at times nagged) the wonderful St Christopher's hospice team and the district nurse team to make sure she was looked as well as she could be.
I want to emphasise that we knew that we were not medical experts but we knew Mum so we did nag the teams if we thought that there was something that Mum needed that she was not getting.
Given the rareness of this cancer (only 70 people in the UK per year are this unlucky to be diagnosed), there is very little online that we could find. Thus really the point of this is to give some pointers which I hope others will find useful. However I am quite explicit in places so please stop here if this could prove too much for you.
Food
1. we found blending Mum's food (warm milk and Weetabix) worked for her. We invested in a Nutribullet and thus were able to blend some of her favourite foods to a suitable consistency for her. This meant that she at least was getting some vitamins down her.
2. her food buds changed - it was important to understand from her that foods that she previously loved, she no longer did. We tried each and every day to find food that she found appetising and that she could eat. Nutribullet noodle soup was something she loved.
3. one thing we the family struggled with was seeing how little Mum wanted to eat. Obviously from our point of view, intake of food gave her strength which would mean that she would live longer. However we had to learn to listen to Mum and not force Mum to eat if she did not want to. We had to let her do what she wanted.
Medicine
1. we bought her a daily tablet container so that she could more easily track what she needed to take. It was also important for her that she wrote down in a notebook the times she took her tablets - a way of her ensuring her independence. It was also important to us so that we could see what she had taken and when so that we could help if she was in pain.
2. Mum did not want to be become dependent on the morphine .. did not want to become an addict she said. It was important therefore to hear from the various NHS/hospice teams that the level of morphine was more than suitable for her cancer.
Dressings
1. it was extremely important that there were sufficient silver and charcoal dressings as the tumour grew. There is no easy way to say this - the tumour had a horrendous smell and distressed Mum greatly as she was a woman of great cleanliness. We therefore found as many ways to help with the smell - candles, reed diffusers and flower bouquets. This helped her.
2. It was essential that the dressings stayed in place but were not too tight. The tumour which was on the right hand side of her neck was in a difficult place to dress so my sisters became ingenious in creating zigzag patterns with the dressings. This provided some flexibility to the dressing and my Mum's neck.
3. the tumour is an external lump on the neck that can ooze liquid, sometimes blood. It can be a variety of shapes - Mum's initially was a small lump that grew into a golf ball size and then just spread into a small fist size. It cannot be ignored - it was clearly visible to Mum every day and to us. It was distressing for her and we had to acknowledge this to her as to lie would have been wrong.
Catastrophic event
1. We had been told that the end for Mum could be a catastrophic event ie a bleedout but having spoken to a few professionals, we came to believe that this would not be the end for Mum as this event itself was rare .. we thought what would be the chance of a rare catastrophic event when anaplastic thryoid cancer itself was rare. Sadly we were wrong.
We had prepared as told by the hospice team though with dark towels and yes, they were much needed. They hid the bleed from Mum it happened and I am sure this provided some comfort to her. The bleedout for Mum was a constant flow of blood .. not spurting out as we had imagined .. just constant.
Black towels are easily bought online and on the high street - we bought our black ones from Matalan.
Lack of energy
Mum's energy levels diminished week by week and she began to sleep more and more. It was important though at times that she managed to get downstairs to the sitting room when again she might doze off. However it was a different environment and gave us time to change her nightclothes and the bed linens.
We needed to wash daily for her as the tumour smell would attach itself to her clothes - this was inescapable - so this washing alleviated as much of the smell as we could.
We also bought nice new clothes for her as she was losing weight rapidly but we wanted her to maintain her wonderful sense of dress. She did not want money spent on her though so we had to compromise on clothes from Primark, somewhere her granddaughters normally shopped. This however did cheer her up - bright colours and the smell of new clothes.
These are some of the key things that I wanted to share. I hope that I have helped but if anyone has found the above difficult, I am sorry, however I do know that we would have liked to have known some of this when my Mum was diagnosed.
If anyone has any other questions, please let me know and I can try to help if I can.
Thanks
