Feeling rotten!

Hi Rich. I know someone will get back to you with some info as I have heard others on this forum have experienced some side effects that you are mentioning. It is good that you are having some tests to try and get to the bottom of things. The extreme fatigue can be due to thyroid issues as radiotherapy sometimes affects the thyroid. Have you had a blood test to check this out? Medication can sort this out. Peripheral neurophathy is sometimes mentioned too which can affect your walking and I have heard others mention issues with brain fog, memory after chemo. Hearing  can also be affected by chemo. I do hope someone with first hand knowledge can give you more info.

The dry mouth I can comment on as it is something that I and many others on the forum suffer from. I have found that it slightly improved over time but for me is a long term issue. I find dry mouth products such as Biotene or Oral 7 mouth sprays and mouth gels helps quite a bit as have Xylimelts. I always have a bottle of water with me wherever I go.

It is hard after going through such difficult treatment then having these side effects. You could contact Macmillan and speak to one of their nurses as they may have more info that might help.

I do hope that things get sorted out so you know exactly what it going on and the effects you are suffering can be minimised.

Sending positive thoughts

Lyn

Hi Rich123, 

So sorry to hear about your after effects post treatment.Its very hard to go through such a tough treatment and then be left with some other challenging issues that may be short or long term.

Im 16mths post treatment 35 radiotherapy and 2/3 cisplati. for T4 N2bM0+16 Tonsil Cancer and feel very lucky ( and grateful)to still be here …

That said I do live with some difficult after effects including :fatigue ,neuropathy in left arm ,lymphodema muscle loss ( walking improved but had to use a mobility scooter for months).Have breathing issues  ,dizzy spells nausea ,headaches ,dysphagia ,tinnitus (intermittently)… the list goes on…My pain is manageable and I get away with only needing Morphine occasionally…. I do hope your hospital team can investigate and find ways to help you cope with all of the issues you are experiencing .

Does your hospital provide a late after effects clinic or a Maggie’s centre which may be able to provide further support.? 

Lyn raised a good point about having your thyroid checked

I have been told that they also think I have long Covid ( had this for third time just after finishing chemoradiation )due to metal/rancid taste and breathing problems now on two asthma sprays which do help a little I’ve emailed a Specialist Dr who deals with Long Covid and the list of symptoms is pretty extensive

Im learning to manage my fatigue a little better. I can spend 5 days on a bad week in bed but have learnt to listen to my body , rest when I need too sitting and sleeping quite upright doing small gentle  exercises with arms legs neck and shoulders when I can. I try and take small walk around my garden or Sit outside on a chair to get some fresh air.

I find that if I over exert myself for a couple of days  my body will need to recharge again.

As for brain fog and not being able to recall words I feel like I could win awards in both.. it’s very frustrating but I now try and  just take a deep breath as nothing I do seems to help my memory issues.

Dry mouth is big issue as Lyn  said saliva sprays can be helpful I use Orilieve  I’m just trying a new spray which is a little bit of olive oil and water in one of my old orilieve bottles to spray on inside of cheeks ( lovely consultant radiologist advised me to try 

I still use the  bicarbonate of soda and salt water homemade mouthwash every couple of days plus I clean my teeth 2/3 times a day and use bioXtra dry mouthwash daily.

Im sending you all my best hopes for improvement and support with your ongoing recovery 

Debbie