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I was born during the time that women took the thalidomide drug and have suffered many ailments connected, like muscle waste, vascular veins, badly grown corns, amputated toe and metatarsal problems......Though they are not life threatening, coping with it isn't seen as important as the cancer; I am having trouble with the specialists considering what I have to go through just to get to an appointment.

Having gone through 30 radiotherapy treatments and 10 chemo sessions, I am now being asked to consider undergoing immunotherapy, and I am less trusting:

I feel like not having anymore treatment.......

What has made any one of you so apprehensive, that you didn't want any more treatment?

  • Hi  and welcome to this little corner of the community.

    Sorry to read that you are a child of the thalidomide years. We have a good friend who had similar experience as yourself.

    I have been on my journey for over 24 years with a very rare, incurable and hard to treat blood cancer so I have had years of moving from one treatment to the next and the next….

    I can understand your apprehension about going on to more treatment….. I was the same when my first Stem Cell Transplant failed (See my story) but as my case had been reviewed by top UK Haematologists I knew that I had to go for a second Stem Cell Transplant…….. if I didn’t I would have to go into palliative care for a year or so.

    I was very apprehensive going into my second Sten Cell Transplant as it was made very clear that the treatment was going to be very strong and the recovery would be long and indeed this was the case…… and zi was left with some post treatment ‘left over’ medical issues……. But my last treatment was over 8 years ago, I turn 68 in a few weeks and I am living a great life..

    You have to weigh up all the pros and cons…… based on the information you are given by your clinical teams and make your decision……. 

    ai am sure that there are others in the Lung Cancer support group who have walked the same decision pathway.

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi , Thank You for your reply....It's not your fault as to my illness, and I feel it for your friend - Perhaps I should have mentioned that despite everything else that I am going through, I do remain a positive person;

    My point is that there are things that we learn along the journey of our lives.....I advocate about disability, and it's what keeps me going; yet their are situations that my oncologists can make someone apprehensive, especially when kept in the dark.....

    I don't want to feel or sound like I am unappreciative for their help towards trying to make me more concerned about my treatment; as every person goes different experiences and have different reactions....

    I also take on board that some of us share them or find it hard to speak about our hospital experiences....

    Having to go home after treatment without heating or hot water doesn't make things any better - I would like to know if there were any housing problems revealed to your medical team that you (or any of the readers here) were expected to go back to - Even after finishing my chemo and radiotherapy treatment, I am expected to go for immunotherapy through the same housing situation, having also a toilet with pipes unattached, leaking, no windows to a fireless-proof door and a light switch to the bathroom, that cuts off ALL the electric when switched on - Did any of the readers have to go through bad housing situations during treatment? What did you or they do? I feel like not staying at home 

  • Hi again  I was very fortunate in that I had no issues with regards to my home and living conditions...... I can only imagine how these challenges makes your journey that more difficult.

    Let's see if any members have any first hand experiences to help you out.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides practical information, benefits, financial and housing guidance or just a listening ear.

    We also have our Ask an Expert section but do allow a few working days for a reply.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike (Thehighlander), I respect your reply and appreciate what you have said.....Yes, the home conditions matter I feel when taking account to the needs and expectations of a patient...... I always see it to be glad to be alive, and should feel fortunate to be going through difficult times; as someone that has the opportunity to help others who may be going through hardship(s)....Even if it is 62 yrs of experience with or on the NHS

  • Hi Master of Positivity, you certainly sound like you've a lot on your plate right now.  Housing should be up to standard for all of us.  Are you in rented like myself or do you own?  Your local council can most definitely spur on repairs that need doing (i learnt that myself after being without a boiler in December!)

    I'd thought they were just to help people in local council properties.  

    Occupational health at your hospital of treatment may help too or your local MP?  Local newspaper could embarrass housing associations to speed up help.  We all deserve the basics of living. Ring the council as a first thing and don't play it down. Make a fuss, you absolutely need hot water, warmth, pipes in your toilet and glass in your windows!  

    We all need some support to get through this awful journey. 

    Not sure what you mean about consultants keeping us in the dark leading to apprehension?  Do you have medical concerns they are not addressing?