Hi Min and Mavis thankyou both .To be honest I am quite relieved I dont have to wait any longer to begin treatment , the doctor I saw today said he was just going to go ahead rather than waiting for funding approval , good man ! Iwill have to be very vigilant about getting myself to the hospital if I get an infection sooner rather than later , like a lot of people I usually do anything I can to delay going in to hospital but remembering a post of yours Min I will be much quicker now as I realise I cant take any chances Now I have just got to have a stern talk to myselfabout doing these injections every day, there is no chance of Jeff doing them he would be flat out in seconds poor lamb!! lots of love Bridget x
Hi Craig its great to hear things are looking up for Etta now , especially when those pesky numbers drop really low!! Eve has already given you good advice about getting some helpand I cant add to that except to say make sure you insist on help , you are more than entitled to it!! If you can keep working I am sure it will help you both in all sort of ways not just the money aspect but keeping life a little more normal . I found my Macmillan Benefit advisor a godsend when applying for benefits so I can reccommend going to them first. I llook forward to hearing more good news from you and Etta Please pass on my good wishes to her love Bridget x
Hi Eve and Sue well got it sorted today I will be starting on Bendamustine, Thalimode and Prednisalone ( just the same as Dex but reccommended with these two drugs) in a weeks time So although I am not on a trial , my consultant believed one of the trials has been stopped due to blood counts not recovering , not sure which trial ) I will be on the same regime Have been warned neutropenia is a common problem, hence two weeks on then possibly a third dose if bloods have recovered , meaning either one or two doses of Bendamustine in a 28 day cycle. I am not very keen on injecting myself against blood clots each day but its better than being on Warfarin I suppose . I had to laugh when fatigue was given as another side-effect!! Everything they give me causes fatigue along with that old favourite constipation!! What joy back on 3 lots of laxatives again!! It will be interesting to see how it affects us So onwards and upwards as Tom would say! love Bridget x
Hi Anna welcome and sorry you have found yourselves members of the mm club. Its great that you are supporting your dad , I am sure he finds it invauable , but it must be tough on you especially with a daughter who has health issue too Please dont feel guilty if you cant always keep his spirits up ,sometimes the down times happen whatever we do ! I think the pp levels could still go down and they may decide to carry on with Velcade if the side-effects arent making life too horrenous for your dad or having too serious an effect on blood levels , such as neutrophils and platelets The best thing to do would be to bring this up at your dads next clinic appointment or get in touch with his specialist nurse,either you or your dad, to ask them to explain things more clearly and tell them what your dad hopes for. Sorry but its hard to give any really useful advice as we are all so different with this illness Please try and make time for yourself too Anna , its very hard to watch over your dad and your daughter too and you need to escape sometimes My youngest daughter has cystic fibrosis and all her childhood was hard knowing all the time we could lose her Luckily treatment has improved so much since she was born that thage expectancy is now 30 as opposed to early teens Mind you she is 26 now and I am starting to feel the clock ticking! I also worry that I will be too ill to help her when she needs me most and that terrifies me . Hang in there Anna , we are all here for you good luck Bridget x
Hi everyone this post has really been interesting , the differences in our care and hospital resources amazes me in this day and age . I believe we all should have reasonable access to specialist cancer centres to level this out .Recently a consultant at my local hospital was surprised that Ichose to travel to London rather than be treated locally , I dont think he was aware of the differences between the two from a patients point of view. Min and Sarah its heartbreaking when I think of you losing your husbands too soon but this b—-y illness takes its own course, and its impossible to compare when we all react to treatment so individually and the disease progression does not follow a set course .If only it were different . UCH are opening a specialist cancer hospital next spring All the building work has been completed and they are now equipping and staffing it to be ready for the spring . I think this will be the first specially built cancer hospital in the UK , hopefully it wont be long before others are built in all large towns and cities The aim is for all care and appointments to be under one roof so saving patients time and energy Each floor is for a specific range of cancers On eah floor there will be relaxation and chill out spaces for patients and families There will stations where you can log in and see how long before you are seen and leave anote to say you will be in the coffee shop or wherever All scans ,x-rays and blood tests will be done in the building and it will have its own pharmacy Macmillan will have a large amount of space for their services including complementary therapies. I really hope the publicity and positive feedback this hospital will provide means we can push for similiar hospitals to meet the needs of all cancer patients in the near future It must be so frustrating for nurses and staff to work in hospitals that lack the best resources too , so their input is vital . Well heres to the future , not too distant I hope In the meantime we have to make the best of what we have and keep asking our questions and being as informed as we need to be Thank goodness we have this forum to share experiences . love Bridget xx
Hi Sharon hopefully you wont have to wait too long before you feel ok again Thats such a long wait for PET scan though, mind you I have never had one I dont think UCH has access to PET scanner I wish they did if reports about their accuracy are true! I know what you mean about having to wait for RT I used to despair after getting the district nurses out to give me a jab but the relief only lasted an hour! Heres to pain-free existence forever! love Bridget x
Hi Craig I am glad Etta is over the worst You two will get through these times as you seem like a very strong partnership, I know I couldnt manage without my husband Just a word of caution though try and make some time for yourself that has nothing to do with myeloma or hospitals as it can take over your life , so try and have some fun too love Bridget x
Hi Sharon thankyou . Its such bliss to have got rid of that awful pain at last !! Now I dont have to feel pressured to go into the hospice for methadone trial either , I really did not want to do that. I hadnt realised until last year , when radiotherapy got rid of the last tumour on my spine, just how precise and effective it was these days , thank goodness . How are things with you? I hope you are feeling ok lots of love Bridget x
I am sad to hear your mum has passed away but at least she was with her family She will always be in your hearts and memories love Bridget x
Hi Gina what a relief for you to know its not her lungs causing the breathlessness Hopefully mum will be feeling a lot brighter today and you can all enjoy the weekend love Bridget x
Good morning everyone a very interesting topic this not sure I can add much except to relay my own experience . From the initial consultation at UCH I have felt they are at the forefront of any new treatments With referwence to their hands being tied by NICE guidelines I have never felt that was the case.When I asked about the Velcade rules on the number of times it can be used I was told there are always ways and means to get what I as the patient need This has been made clear to me from the beginning in that they have to work through the process but if it doesnt meet my individual needs then another approach will be found As for being made aware of pp numbers from blood tests I have always been content to know they are too faint to quantify or on the up This is because UCH take a whole person approach to monitoring my illness The first question at clinic is to ask me whats new , as in any new pains or symptoms Where warranted new symptoms are investigated with bmb or mri scans Before any new form of treatment is begun they hold a multi disciplinary meeting , where all team members have equal input T he results of these meetings are discussed with me and I put any questions and my point of view So all in all I feel very lucky to be having treatment at UCH and their approach suits me as I know they will always come up with something and I dont have the worry that they will say sorry but you have reached the end of the road unless ALL possibilities have been tried Sorry if I sound a bit smug love Bridget x
Dear Mari I am so sorry to hear Steves pp have risen But as Gill said hang in there they may yet go back down It sounds as if your doctor is quite laid back about it too Mari you are so good at supporting others on here please dont ever feel you are a burden , it couldnt be further from the truth and we are all here for you and Steve whenever you need us Stay strong lots of love Bridget x
Hi Gill I cannot believe the arrogance of these banks!! No wonder you are spitting feathers how dare they treat you like that after years of being loyal customers! If I remember rightly HSBC are runnning a tv ad campaign based on meeting local needs Perhaps you could start with your local paer and radio station stressing the local angle They may be able to advise you how to spread the word further afield I really hope you can shame the b—–rs into giving Stephen what is rightfully his love Bridget x ps what about contacting Macmillan press office too ?
WOOHOO BRILLIANT NEWS!! Dai its wonderful to hear you have been given freedom from the beast I really hope its for a very long time. Now you can both have fun and live life to the max again Thank goodness you made the journey from Wales and away from that awful doctor , when you did. I was so upset when I read your first post on here, its a shame that ignoramus cant read yor post and understand how poor a medic he is ! Heres to fun and relaxation and more books and songs to be written lots of love to you and Janet Bridget xx
Hi Debs if ever a rant was needed that one was ! How infuriating for you and why dont they listen to us the people who are on the sharp end of their service . I had problems after seeing a pain consultant , between him and my gp it took weeks to get my morphine and pregablin sorted out Actually I dont take the pregablin anymore it made me very dozy in the mornings and the worst pain has gone thanks to radiotherapy Good luck to Nick I hope he gets a decent response to his complaint lots of love Bridget x
