Lucy you should telephone your Consultants Secretary and ask these questions and she will likely put you in contact with a specialists nurse. You can ask what the NICE target times to be seen or start treatment are from the specialists nurse. If you are lacking clarity over your diagnosis at this stage then you should ask them. I know that we get told so much information at a time when stress sometimes means we don’t hear or take in that information. I don’t know the target times for your type of cancer so cannot help.
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all is not well
- Thread starter lucylocket61
- Start Date
lucylocket61
Expert
An update. I still have a dry mouth, heightened sense of smell and altered taste. I don't know why. I am living on whole milk, a banana a day, and rich tea biscuits. I am having a good multivitamin too. Anything else tastes disgusting. My GP has no suggestions, possibly from the covid? It seems to be a case of there being no treatment really. There seems to be a lot of people with this.
Meanwhile I continue to lose weight and wonder if I will be well enough for eventual surgery. I am doing everything I can to try to keep my carbs down, but I have to eat what I can too. I am averaging about 1100 cals a day.
I see the respiratory consultant on the 21st and will tell her about this situation. I feel that malnutrition or starvation is my major issue right now.
Meanwhile I continue to lose weight and wonder if I will be well enough for eventual surgery. I am doing everything I can to try to keep my carbs down, but I have to eat what I can too. I am averaging about 1100 cals a day.
I see the respiratory consultant on the 21st and will tell her about this situation. I feel that malnutrition or starvation is my major issue right now.
Sometimes diabetes has to take a back seat and at the moment you have to concentrate on other things, if I was in your shoes I wouldn’t be bothering too much about carbs but eating what I fancy and what I can enjoy that will give me nourishment, you need your strength for your health like you say, maybe you could speak to your GP about maybe short term insulin or something else to help you through this period. Just a thought
Sending you as always healing love & hugs x
Sending you as always healing love & hugs x
Hey @lucylocket61 ,
You need to be well nourished if you are to have surgery.
There are supplements, a bit like milk shakes, you can be prescribed if you are not up to eating. You need to ask, either GP or consultant secretary. Don’t just sit back and wait for them. You need this help and advice now.
You need to be well nourished if you are to have surgery.
There are supplements, a bit like milk shakes, you can be prescribed if you are not up to eating. You need to ask, either GP or consultant secretary. Don’t just sit back and wait for them. You need this help and advice now.
lucylocket61
Expert
I am not sitting back and waiting. I am being as pro active as I can. I tried various milkshakes in the hospital and they were disgustingly sweet and strong flavoured to me. It's part of my weird taste buds issue. Things don't taste the way they should.
I may be oversensitive or misunderstanding you, but I am trying my best to get help and information. I feel maybe some people think I should be trying harder?
HSSS
Expert
Did you try the keto ones like the slimfast ones? I’ve no idea what they are like but they might be less sweet than others and if they taste ok might help on the bgl front too. Or go the other way and try deliberate strong tasting foods eg pickled onions, curry, cheeses (as dairy seems ok with the milk), meat covered in spices and maybe overwhelm the weird taste buds. I guess it’s just experimenting til you find as many foods you can tolerate as possible and as Pipp says if the bgl goes silly then ask for some temporary medication to get you through this phase by whatever means necessary and then sort it out and get back off it later.
big hugs and hopefully the consultant next week can make some progress in the system for you.
big hugs and hopefully the consultant next week can make some progress in the system for you.
Not at all, @lucylocket61 . I just don’t want you to be forgotten about. It is horrible when you are not able to eat, and have such a long wait for a treatment plan. I have had that experience myself. Though without the added complication of covid.
When I couldn’t tolerate food, I was given some of those milkshakes on prescription. I didn’t like them, but was told the best way to tolerate them was to get the mild flavoured ones, such as vanilla, and add some of my own flavours. I used cocoa, and coffee to alter the vanilla ones. I was also advised by the specialist dietitian to add cream to food. Just a spoonful, starting small, and gradually building up. I also had the good advice that a small piece of tinned pineapple rubbed around my mouth would take away the dry mouth symptom that was making food taste so bad. It helped.
I am sorry if you felt I was criticising you, or suggesting you needed to be more proactive. Not at all. It is the current pressures on health services that is causing the lengthy waiting for solutions, and during the wait you should be able to get understanding and solutions to your concerns, that is what I mean.
As always, wishing you health and strength.
Hi Lucy. Fortsip is the milk shake type drink they give in hospital. I agree they are dreadfully sweet to the taste and I’ve never liked milkshakes anyway. They also do a Fortijuice which is like an orange juice but packed with calories etc like the Fortisip. Maybe the Fortijuice would be something your GP could prescribe for you to try. I’m almost sure it will raise your BG but as someone else said perhaps sort term use of insulin just to keep you well enough nourished for surgery. I had this constant weight loss, unable to eat problem earlier in the year due to cancer treatment and it gets frightening when you just see weight falling off you every day whilst you are trying your hardest to eat enough calories. Take care. X
Lucy, have you tried something like full milk (maybe cream added), then a dollop of ice cream, blended? That might not be too sweet, and have an easy to take texture.
I know a scary number of decades ago, when I was incredibly ill, I was taking most of my nutrition through a naso-gastic tube. It was very easy, and clearly had no taste, but being very milk based it upset my tummy - badly, so maybe just be mindful of that that potential (of a very milk based diet).
lucylocket61
Expert
I am sorry you have been through this too. Are you still having cancer treatment?
Hi Lucy. I finished active chemo earlier this year. i had my first cancer diagnosis in 2013. Sadly, I had a reoccurrence of the cancer in 2021 (50 years old). This time my cancer has spread in my body so I am living with cancer. Because of that I have ongoing targeted therapy drugs every three weeks for the rest of my life (Plus hormone therapy tablets daily). I know someone who has been on targeted therapy for cancer that had spread from her breast to her liver 12 years ago and she is still going strong, so I am hoping I am lucky but I accept that things can change from one scan to the next. psychologically I find it harder than I have done physically most of the time. I read someone mention pineapple. That was something another chemo patient told me about. I used in both in 2013 and 2021/2022 when having chemo. Just a little cube (i used a small tin of pineapple over a few days) and I found that it helped me. The Fortijuice I had both times with chemo. Steroids during treatment lead me to diabetes and ketones at the point of diagnosis, so I was on insulin to begin with, but once off the steroids I got myself off insulin with low carb diet and the help of this wonderful forum within 12 weeks. It’s a tough one the cancer journey and it’s a very individual experience for everyone but with some common themes. It’s absolutely fine to feel overwhelmed by the whole process, why would you not. What I have learnt is that my specialist nurse is my friend and I have to accept that sometimes I need her help. I’ve never liked asking for her. Always been the one sorting everyone else out with their problems whether that be at home or work. It’s not been a comfortable position for me to ask for help but I have had to, and I have learnt that is ok and they would rather I talk to them if there is a problem then let the problem continue and cause a bigger problem. It’s a tough time and I wish you the best of everything to get you through. The waiting game is, for me, the worst of the whole process.
That is a wonderful post and I am sure would be helpful to anyone facing the challenges of cancer, or other potentially life-limiting conditions.
You get a winner award. Wishing you every good fortune.
lucylocket61
Expert
Thank you for explaining. I am sorry I jumped to the wrong conclusion.
No apology needed. Apart from me to you. I ought to make sure there is no ambiguity in what I write.
Following and thinking of you, frequently, @lucylocket61 .
MrsA2
Expert
I've no personal experience of long covid or of cancer, but I am a good cook and eater!
I'd suggest some home made vegetable soup.
My basic is always
An onion
A celery stick or 2
Some chopped cabbage (green or white)
The stalks from some broccoli
A carrot or 2 (and or swede)
But essentially throw in whatever you have into big pan
Top with cold water to cover
Add add 2-4 heaped teaspoons of Marigold vegetable stock
Salt and pepper and other herbs to taste
Boil for about 30 minutes or so then blitz with a hand blender or into a mixer. Or you can leave it unblended depending how small the veg were chopped
This makes about 8 portions so vary each by adding chopped ham or sausages or grated cheeses
It's full of nutrients, fairly low carb and the fats can be upped by adding cheese or cream or milk.
Extra lentils or beans can be added to the mix before cooking, depending on carbs, budget, cupboard contents
It's also comforting and cheap
Any excess will keep in a fridge for 4-5 days or in a freezer. If freezing use less water so it's quite concentrated then add more water when reheating (saves freezer space)
Also if you are feeling too poor to chop, all veg can be put in large chunks and just cook it longer. When soft it all blends.
@lucylocket61 i just wish 8 was closer to be able to make some for you
I'd suggest some home made vegetable soup.
My basic is always
An onion
A celery stick or 2
Some chopped cabbage (green or white)
The stalks from some broccoli
A carrot or 2 (and or swede)
But essentially throw in whatever you have into big pan
Top with cold water to cover
Add add 2-4 heaped teaspoons of Marigold vegetable stock
Salt and pepper and other herbs to taste
Boil for about 30 minutes or so then blitz with a hand blender or into a mixer. Or you can leave it unblended depending how small the veg were chopped
This makes about 8 portions so vary each by adding chopped ham or sausages or grated cheeses
It's full of nutrients, fairly low carb and the fats can be upped by adding cheese or cream or milk.
Extra lentils or beans can be added to the mix before cooking, depending on carbs, budget, cupboard contents
It's also comforting and cheap
Any excess will keep in a fridge for 4-5 days or in a freezer. If freezing use less water so it's quite concentrated then add more water when reheating (saves freezer space)
Also if you are feeling too poor to chop, all veg can be put in large chunks and just cook it longer. When soft it all blends.
@lucylocket61 i just wish 8 was closer to be able to make some for you
lucylocket61
Expert
I have a water infection. I can't get the antibiotics until tomorrow morning. Apparently the tumour is likely to be suppressing my immune system. If I get another infection after this, he suggests a maintenance dose of antibiotics daily until I get treatment. Anyone know about this? He is going to ring urology to try to get my appointment moved forward, and I will ring the consultant secretary too. The doctor has also prescribed a selection of build up for me to try. I have blood tests tomorrow morning.
lucylocket61
Expert
Ps and tablet for my oral thrush, as it's still there, which may be adding to my eating issues.
Hi Lucy
So sorry you are going through all this.
In answer to your question about antibiotics. I know someone who has been on a maintenance dose of antibiotics for 10 years as she has a suppressed immune system.
I hope and pray they manage to bring your appointment forward.
Edit: And yes, when my son was on tablets for oral thrush he had no appetite either.
Hugs
X
So sorry you are going through all this.
In answer to your question about antibiotics. I know someone who has been on a maintenance dose of antibiotics for 10 years as she has a suppressed immune system.
I hope and pray they manage to bring your appointment forward.
Edit: And yes, when my son was on tablets for oral thrush he had no appetite either.
Hugs
X
