This is something that I could add lots to but mainly I would say that for me it took me a while to adjust to being at home again. And that for anyone who had just finished treatment I want to say it’s ok and completely normal to feel unsettled, take one day at a time and in time you will feel comfortable being at home again. I did find sleeping at night difficult and put it down to that fact that while in hospital you are woken through the night for your obs and its a totally different atmosphere to home. This did improve in time.
Feel free to ask me anything you want
Although most of my chemo was carried out at the Day Unit and/or at home, rather than as an inpatient, I did find it was almost like an ‘anti climax’ when it came to an end. I think during your course of chemo your goal is constantly to complete the next cycle in tact and can’t wait for it to be completed, but when you actually get to the end you lose a lot of the structure and routine that develops during your treatment.
I found that a lot of people immediately assumed that once my chemo was completed, that I was cured and back to full health! In fact neither are true - CLL is not curable and I actually felt physically worse than before I started my treatment. I don’t want this to alarm anyone or question whether you should go ahead with treatment. I think your body takes such a hammering by the end of chemo that you are really quite tired and quite emotional, and perhaps not prepared for that.
I’m now 3 months post finishing chemo and have returned to work, managing 4 out of 5 days a week. Mentally it has helped to have what I would refer to as ‘distraction therapy’ - something else to focus on other than pills and symptoms! My Ward Manager (I work in a hospital) has been very supportive, but the danger is that others assume that because you’re back to work and look ok, they assume you’re back to full speed. You need to be quite realistic in what you can physically and mentally cope with… and gradually things do improve.
I don’t know what others have experienced, but I feel much more could be done to support patients post chemo and in returning to work.
Gillian, one of the key points raised in the Hear our voice Bloodwise policy launched yesterday is asking for more emotional support to be provided during and post treatment. Many of us have problems dealing with our mental wellbeing at this time.
Thank you, Pisces56. That’s good to hear that the issues regarding emotional wellbeing are being considered.
Yesterday I attended my Haematology Clinic - my appointment was for 11.30, but wasn’t seen by the Consultant until 1.15. I don’t mind the waiting, but immediately, when there are such long delays, you feel conscious of any time you take asking questions during your consultation and therefore don’t always address all the issues in much depth.
Hi Gillian. I hope your appointment went well. I always tried to remember that my consultant had perhaps been called to the unit to see someone who was having problems, or that he had perhaps had to spend extra time with someone who had received bad news when he was running late. He was very good asking me about what I had been doing since he last saw me, asking about holidays etc, as a way to see how I was moving on. Do you have a CNS, as they may be able to help with questions and can discuss your fears with you?
Thank you for your reply. Unfortunately the Clinic I attend is always incredibly busy and the later your appointment is, inevitably the longer the wait. On this Clinic day there were 100 patients to be seen (normally 80 apparently)!
For the first half of my treatment I didn’t have an allocated CNS. The CNS I should have had retired a couple of days after my diagnosis. So the replacement CNS didn’t start until several months into my treatment. She is helpful and approachable, but again incredibly busy, working across 3or 4 different hospital sites.
Basically more staff are needed all round I think.
Have a look at some of the threads on life after treatment, and living with and after treatment. Hope these may help