Call the helpline 0808 800 4040 to talk to a nurse. Good luck. 

Hello bone cancer patient

I declined your request but are more than happy to chat on open forum. Hope you are keeping well.

Ed

Cheers mate getting pump off monday then on thursday picc line dressing changed then next week chemo and blood tests all appointments we will try and go away on day trips with coach trips have to see 

The day trips by coach sound an enjoyable way to relax and distance yourself from hospital visits. Enjoy.

Ed

Hopefully going to Brighton  and maybe Grest Yarmouth have to see how I feel 

Hi Farmer Ed hope you are well Had pump off yesterday . Slept better last night just got upset stomach and diarrhoea not nice . Got picc line dressing change on thursday . Next week got three appointments going to start camping at hospital

Hi mate well I got pump off tomorrow picc line dressing change wednesday and a consultatation then immuno on friday this seems par for the course at moment . Going to book coah trip to Great Yarmouth tomorrow to go on a Tuesday when I dont have appointments and also no chemo pump either 

I had my second session of chemo on Friday . Had pump removed from arm this morning . Then Wednesday 2 appointments picc line dressing change and bloods then consultation . Then friday immunotherapy another busy week serms to be the par gor course . One good thing the drugs company are paying for taxis to pick me up snd bring me home 

Hi Navaraman

Hope you have a lovely trip to Great Yarmouth, I’m pleased for you that you’ve now got the pump removed and your appointments have been made and you have a clear path forward. The taxis to and from the hospital will make your life easier and save you a lot of money. Visits by taxi to our local hospital are £20 each way and it soon mounts up. Like you I find the constant appointments for scans, treatment, blood tests, consultations very wearying and it makes it difficult to plan a day out or a weekend away.  I hope your immunotherapy goes well on Friday and if its similar to mine the whole procedure is done in just and hour and half.

Ed

Thanks Farmer Ed hope you are keeping well . This treatment I am having is very draining the pump on arm for 48 hours is dam nuisance. But if it helps all well and good . If I was having to pay for cab to and from hospital it would be £36.00 there and £36.00 back so I am glad the drugs company are paying for it . Still the weather is supposed to be getting better again so be able to spend more time in garden but covered in factor 50 and avoid the hottest part of day 

Fresh air is really good for your your health and keeping up spirits. Like you I'm fortunate to have a garden. Good to see you protecting your skin from the sun. The cancer I've got is from over exposure to the sun and would have been entirely preventable had I known and taken more care. Your mention of going to Great Yarmouth has got me set on a trip to the coast, I've got treatment tomorrow then no hospital appointments for 12 days so will choose a nice day when Ive got a bit of energy.. 

Ed

Good idea go fot it enjoy it whilst you are appointment free . I find that Tuesdays and Thursdays are appointment free for me . Also they have said if we want to have some days off tell them and they can work round it which s good 

Good idea go fot it enjoy it whilst you are appointment free . I find that Tuesdays and Thursdays are appointment free for me . Also they have said if we want to have some days off tell them and they can work round it which s good 

Well Farmer Ed had my second round of immuno today feel fine . Keeping out the sun now though 28° here . Got 2 appointments next week I think . Might as well move in to hospital grounds in tent haha . The nurses today were brilliant . Afterwards we went to Maggies . And sorting out what benefits I am entitled to they are very helpful . Have you got one at your hospital 

Hi Navaraman,  sounds like you are more at the hospital than at home.  Sometimes it feels like that.  You are lucky you have a Maggies close by that you can go to.  We don't have one near here because I believe that they are fantastic support and help.  Glad your immunotherapy is going well.

Lee x

Shame you have nit got a maggies near you because they are brilliant . They help you alot give you advice plus they make a good coffee as well . We are going to see them on Tuesday afternoon to see if I can get any help finicially as my cancer is terminal . And yes I am at hospital more than at home . Seems 3 appoitments a week is par for the norm . Still if it holds those bloody tumors at bay its worth it 

Hi Navaraman, the benefit system can be complicated, good that you are getting help.  I worked for the DWP for 22 years and still find the system complicated.  I have incurable cancer too but still have a good life.

Lee x

Cheers why they make it so hard is to put people off I am sure . Crazy though 

Hello navaraman

Im glad the nurses are looking after you well. Maggies has a very good reputation sadly my nearest is over 100 miles away. At our hospital we are assigned a Mcmillan nurse who can offer support or put us in touch with other agencies and provide advice if we need it. 

Ed

That sounds good to Ed we got sppointment on tueday to see what help I can get money wise maybe rent rebate and council tax rebate etc . Cant get pension credit though becsuse our private pensions and state pensions put us over amounts . Still hopefully will get help have a good weekend and stay out midday sun especially tomorrow and Monday 

Hi Navaraman

Hope you can get some financial support sorted out, we pay taxes and NI all our lives so that we have some insurance if our circumstances change. I'm in a similar situation that I paid into a pension fund for 45 years and also have savings so not eligible. However I consider myself fortunate to be in a position where living with cancer is not also compounded with money worries. Looking like a hot week ahead and planning a trip to the coast for the cooler air, a swim, fish and chips and a beer or two. While my other half is looking forward to a cream tea. Drink plenty keep cool avoid midday sun UV is 7 this week or sunburn in 30 minutes.

Ed 

Hi Ed I know what you mean work all you life and get no help . Some people sit on their back sides dont work and get everything . Still I will keep out of sun today and keep hydrated as well enjoy seaside etc 

Hi Lee

Good for you to post about still living a good life with incurable cancer, it gives hope to the many people that will read this. With modern treatments our quality of life can be much improved and extended even though we all live with some form of incapacity. Keep cool, drink plenty avoid midday sun. Big hug

Ed